‘Nope. Thanks very much, but I’m alright’. That’s what I said when I was offered a couple more counselling sessions after discharge.
What I was thinking was, ‘Are you kidding?! No way. My 24 weeker is coming home after only 12 weeks in hospital. I’m happy. Everything is perfect. I don’t need this. I don’t need another appointment to go to. I just want to be at home with my baby.’
Having started off with no mental health support at all in the regional NICU for 8 weeks, I was so grateful to meet a wonderful student psychologist during the 4 weeks stay in the next hospital. I didn’t understand how much help she had been in the couple of times we had met. I underestimated the cliff edge I was standing on as we prepared for home.
We had appointments most days of the week. Matthew went from needing to be woken for feeds in hospital to crying all day and night. He had the general restlessness of a baby born extremely prematurely, whose brain is still fighting to develop its nervous system. Matthew endured months of physical suffering each time he fed. After the feeling of guilt that my body had failed to carry him for 9 months my body was now letting dairy and soya proteins into my milk causing an allergic reaction. I felt like I had poisoned him. He had a hole in his heart but I had no monitor to beep every time his heart rate and oxygen saturations dropped. Even though this was no longer happening to a dangerous level, it was so hard to leave the security of knowing the numbers on the monitors behind us in hospital and just relax at home.
Whenever we left the house everyone wanted to comment on how small he was and wanted to know all about him and I told them everything! It was mentally exhausting but I was desperate to talk, even to complete strangers just to sort through our experience in my own mind.
For all those months in hospital and months at home, everyone told me how ‘strong’ I was. I knew I wasn’t.
I was detached from my baby and from my own feelings. I got up and kept going because I had to and because my husband helped me. Without him, my baby and I stayed in my room in the dark. I know now that I was scared to really feel anything. Matthew was still so fragile. He cried all the time and I couldn’t fix it, even though I was supposed to be his mum.
I could pick a fight with my husband even if he had done the dishes, made dinner, hoovered and changed nappies. I was flying in to a rage so intense that I didn’t recognise myself. I would imagine myself dropping my son between his basket and my bed. At the top of the stairs, I would imagine him landing at the bottom. These thoughts made my stomach turn and my body stiffen because the thought that I could harm my baby terrified me. It was a long time before I found out that these thoughts were not uncommon in new mums and were a sign of anxiety.
I found myself in tears on the motorway because an ambulance passed me. Suddenly, I felt like I was back in the ambulance, praying that my contractions would stop and my baby wouldn’t die. I would hold him during the night while he cried and I would cry with him. This was partly my distress at failing to comfort him and partly the guilt I felt because I knew some parents didn’t get to bring their baby home or had many complications.
I felt that I wasn’t good enough to be his mum because I had him early and because he was safer with the nurses in his incubator. I thought it would be better for everyone if I just wasn’t here any more…
It was another few months before I realised that those thoughts were a sign that my mental health was at its lowest point and listened to my husband begging me to see my GP.
When I finally went, I cried harder than I had done in a good while. I had been putting on the brave face for everyone for so long. I was agreeing with them that it was great to have my baby home, he’s a miracle, he’s done so well. That’s what they wanted to hear. They wanted to see me smile after all we had been through, but it was such an effort and it felt like I was following a script each time I put on the act. I felt like a failure.
My GP asked all the right questions. I told her everything and it felt SO GOOD. I asked her ‘What if I take the medication and it doesn’t help me because I haven’t got postnatal depression, I really am just a grumpy ass?!’ It was so hard to accept that I wasn’t ok now that my son was finally home. I was meant to be happy.
Every few weeks I felt like I was going back to square one and each time my medication was increased. Now I can say the lowest days are becoming infrequent. I’m still really anxious. Sometimes when I get a flashback, my hands begin to tremor. When I hold my hand down my arm takes or the shaking. I was told I could have an 8 month wait for counselling on the NHS. That felt like a kick in the chest. I wanted to heal.
Through looking in to it on my own, I made an appointment with a wonderful midwife who went over my notes with me and answered questions. Thankfully my wait for counselling wasn’t 8 months and it’s helping me to understand why the sustained levels of anxiety for all those months have had a lasting impact on me.
On the good days I’m sometimes buzzing to the point that I know if one little thing doesn’t go to plan, I will fall apart. I feel out of control, just like I was when I went in to labour 3 and a half months early, and for the 12 weeks when I would go home and leave my baby for other people to care for him. Some days I’m stuck going over and over those awful few months.
Coming up to his first birthday was tough. I was thinking over his birth daily. I was remembering the emergency buzzer being pressed and hearing ‘Please, please, don’t push until the NICU team get here, they need to help the baby breathe!’ I was dreaming about different points in his hospital stay with him lying on my chest with all his tubes and wires. I thought about parents we met and how they coping with multiple complications a year on, or with the loss of their baby after months in hospital.
I was remembering being told I had to go home despite my baby still being in hospital because I was no longer septic, and not to worry about all my crying- it was ‘JUST’ the day 3 baby blues.
I can’t believe how much has happened in a year. It has been long, terrifying and at times, lonely. His first few months at home are painful to remember because he was so distressed and I felt so distant from him. Coming to accept that I had post natal depression and anxiety made me angry that I lost so many months to enjoy him and bond as a family, all due to my mental health.
Premature babies don’t stop being premature when they reach their due date. Parents of sick and premature babies don’t step on to cloud 9 as soon as their baby is discharged home. There is a a void between hospital and home where we go from being surrounded by nurses, equipment and other parents to just us. It’s scary! When it’s quiet at home with no hospital noise, there is time to think, but no professionals to help rationalise.
I know that my husband was feeling all the worries that I had for Matthew, but he was also worried about me. He remembers the trauma of premature birth and seeing me so unwell. He lifted me out of the shower when he realised I was lying down crying on my first morning home without Matthew. He was holding our baby on a day when he stopped breathing. Dads’ mental health can be too easily overlooked.
Mental health support when sick and premature babies go home needs to be implemented if parents are to be fit to return to work and to enable families to recover and move forward with healthy, happy relationships.
🔸 With huge thanks to Sarah Kiker for sharing her story through neonatal care and beyond so openly as part of Neonatal Mental Health Awareness Week | 15-22 April 2019
🔸 Please help Sarah and us to raise awareness of the mental heath needs of families following neonatal intensive care. It’s easy, just use the twitter and Facebook buttons now to SHARE.
🔸 If you have a story you’d like to share or would like to support the work of The Smallest Things Charity, please get in touch at firstname.lastname@example.org
Today the BBC have announced that they are to extend paid parental leave for staff whose babies are born premature.
The Smallest Things Founder and chair of trustees, Catriona Ogilvy, welcomed the news, saying:
“We are delighted to see the steps that the BBC are taking to support staff following premature birth and welcomed the opportunity to share our Employer with Heart charter with them earlier this year. Visiting a premature baby on a neonatal intensive care unit is a traumatic, distressing time for parents without the added worry of work and pay. It certainly shouldn’t count as parental leave. The BBC’s new policy gives parents precious time to bond with their fragile babies outside of the hospital environment and take care of them at home for longer.”
1 in 8 babies born in the UK require admission to a neonatal unit, with those born premature expected to remain in hospital the longest.
BBC Presenter Rachel Burden had her son Henry at 31 weeks weighing 3lbs:
“I’m over the moon and so grateful to all the mothers of tiny babies at the BBC who helped bring about this change. Inspired by the brilliant campaign of The Smallest Things charity – we told our stories, urged the BBC to review its own parental leave policies and they listened. It will make a huge difference to parents of premature children who face enormous stress and extra challenges in those early weeks and months. Hopefully other organisations will now be encouraged to sign up to the Employer with Heart Charter.”
Additional leave granted by the BBC, in keeping with The Smallest Things Employer with Heart charter, sees full pay extended for mothers of premature babies (born prior to 37 weeks gestation) by the number of days the baby is born before the due date. For partners, leave is extended by 2 weeks on full pay.
The Smallest Things is a premature baby charity, established in 2014, to support the needs of families and babies beyond the neonatal unit. If you would like further information about The Smallest Things Employer with Heart Charter, or would like to ask your organisation to sign up too, please get in touch at email@example.com
It’s hard bringing a premature baby home from hospital. The journey and worries go on. I’m trying to be honest with myself, I am struggling. Last December my son Bertie was born prematurely at just 27 weeks gestation. I’d had a complex pregnancy with bleeding from 13 weeks and placenta problems. I’d had numerous hospital stays and each time came away with different reasons. To this day the reason why is still unknown, but essentially my placenta was riddled with infections and I contracted sepsis.
Bertie was born by emergency C section at Gloucester Royal Hospital at 17.18. Later that evening, he was transferred to Bristol St Michaels, and then back to GRH after 8 days. I’ve said it a million times, and I’ll say it a million more, the doctors and nurses who work at both these hospitals are wonderful, wonderful humans who ultimately saved Bertie’s life. We are forever grateful.
Bertie spent a total of 120 days in hospital. It really was one step forward, two (or what felt like many more) steps back. This is something we were told right from the beginning and it really is true. He had countless procedures, blood tests, x rays, ultra sounds and blood transfusions. He contracted the dreaded cold in hospital, twice. Intubated, CPAP, high flow and low flow; all terms I knew nothing about before, but will now forever be etched in my mind. NICU nurses become your most trusted friends and make such an impact on your day, time spent on the unit and, this sounds corny, but the rest of your life! I will never forget them. Other mums are like angels. Speaking to mums who “get it” is the most comforting thing. All NICU journeys are different but there seems to be an unspoken understanding of what goes on behind those closed doors. I have made friends for life and I am eternally grateful for their support. I hope I helped them, the way they help me.
We bought Bertie home on 8 April 2018. At last we could be together as a family of 4. Mike, Charlie, Bertie and me. I thought the stay in hospital was the hardest thing I’d ever done, juggling a toddler at home and a baby in hospital was heart breaking and watching your baby constantly fight is indescribable. Mike and I were like ships in the night. I’d be at the hospital during the day, he would go to work, then he’d go the hospital in the evening and I’d be home with Charlie. We’d be lucky to eat a microwave meal together! The uncertainty of Bertie’s health and development was always on my mind, but bringing home a premature baby who has chronic lung disease and required 24/7 oxygen, who is so susceptible to illnesses and who is “failing to thrive” was and is, much harder.
I cannot comprehend why being at home as a family would be harder than our time in hospital, but it is. I feel a huge amount of guilt for saying that, along with a lot of other things. Like not spending enough time with Charlie, not spending enough time with Bertie, not being a “good” wife, the list goes on. One of my biggest guilt is why couldn’t I carry Bertie to full term. I do know that it is not my fault and that I did nothing “wrong”, but I still feel guilt. I was told by a wonderful woman recently that we must accept our feelings and it is just how we feel. I am working on that.
We’ve been home for 7 months now. In that time we’ve had 2 overnight stays in hospital, endless appointments with physios, occupational therapists, dieticians and Bertie’s fantastic consultant. Home visits from our amazing respiratory nurse, which always felt like a visit from a friend, but also difficult visits from health visitors who had little understanding of pre term babies. I feel immense pressure for Bertie to be “well”. I worry. I am swamped by worry. Worry that he is not developing as he is should be, worry that he will have long term effects of being premature, worry that I’m not giving him enough attention, worrying about his weight, worry that he might get ill again, worrying about more hospital admissions and worry that in all this I’m neglecting his older brother Charlie. Going into the winter is an exceptionally worrying time, a simple cold could put Bertie in hospital. It’s already happened twice and it’s not even been the cough and cold season yet.
In August, amazingly Bertie was able to wean off his oxygen in the day. Then in October he has come off oxygen at night too. This was a massive milestone for Bertie! I was so pleased but with this came more anxiety. The oxygen is almost a safety net, a comfort maybe. Take it away, it’s another worry. A huge ongoing battle for Bertie is his weight and feeding, he takes very little milk and has very little food. He has awful reflux which is not helped by a persistent cough. Recently we had a particularly bad spell and he lost weight. I feel like we go round in circles and it is never ending.
There is a massive lack of understanding and knowledge about premature birth, our babies and life after NICU. By sharing our story I want to help people going through the same and give knowledge to others. One of my biggest frustrations is that I feel a lot of people assume that just because we are home now that Bertie is “fine” and like a “normal” baby. I hope this at least goes a little way in showing this is not the case.
Along with guilt and worry, I am filled with jealousy. When I walk through the supermarket and see a heavily pregnant woman, I feel jealous that they’ve carried their baby further than I did, jealous that they will have a new born baby to enjoy and jealous that they don’t know about the NICU experience. I then I feel bad for having those thoughts and feelings. Another seemingly never ending circle that I hope with time will end.
I am grateful beyond belief to the wonderful NHS. It is still early days for me. I have two beautiful sons, I am so lucky, but also feel like I have lost who I am. In sharing our story hope to find myself again.
with thanks to Sophie for sharing her story, raising awareness of the ongoing needs of families following premature birth and neonatal intensive care.
In hindsight, I should have known, but nothing prepared me for how my world would be tipped upside down after giving birth to my twins at 28 weeks in 2007 – still nothing has!
days before the unexpected premature birth
I wasn’t prepared for the abrupt end to my pregnancy and the finality of the birth. The following days were not how I had imagined they would be when I was a naïve, unsuspecting first-time mum, blissfully preparing the nursery. I remember reading a pregnancy book and how I skipped the pages on Special Care because things like that don’t happen to young, healthy mums like me. How wrong could I have been!
No one spoke to me about the possibility of special care, even though I was carrying twins. No one spoke to me about being a high-risk pregnancy, even though I had swollen up just a week before and had a scan that showed I was carrying twin two very low. No one mentioned to me that I should start antenatal classes earlier as I was carrying twins and may have a shorter pregnancy. No one told me an awful lot.
As a result, when I did go into labour in the middle of a Monday night at 28 weeks, I was mentally unprepared. After a long labour, twin one arrived by natural delivery and was whisked away by a team of medics, leaving me with a consultant talking to his team about how twin two was in distress – no one spoke to me.
Next thing, I was whisked into theatre for an emergency C -section and woke to a photo at my bed side of a tiny doll that turned out to be my Isobel; and to a partner who was as shell-shocked as me but with no babies to hold in my arms.
Of course, I would go on to develop severe post-natal PTSD, anxiety and depression as we battled with our daughters, Imogen and Isobel, through ICU, CPAPs, brain bleeds, oxygen deprivation and so much more that I can’t even remember as my brain has blocked it out. No one asked me if I needed help, as I sat with my head in my arms sobbing at the side of their incubators. The consultant didn’t know how tiny he made me feel when he turned to me and said ‘ I think you realise what you’ve done now and how serious this is’; still to this day I don’t know what that meant, but it cut through me. Still no one mentioned emotional support for me.
10 weeks later, my girls came home, I was overjoyed! However, I had no support group, no Facebook group, no accommodation to live in with my daughters during their 10 week stay in SCBU, all that had made me desperately unhappy, isolated, depressed and extremely confused by how I felt.
9 months later, after home oxygen, nurse visits, physio appointments and feeling trapped in a world that I hadn’t planned, I finally spoke up. I went to see my GP to tell them that I was struggling and was referred for talking therapy. 3 months later, I was still waiting. So, I contacted PALS to express my thanks for the care that my daughters had received, but to condemn their lack of support for me. That got the ball rolling and 10 months after the trauma or premature birth, finally, my long journey on the road to managing my mental health demons got underway.
Now, 11 years later, my twins are well. They are healthy, they are happy, active, smart and wonderful. But as I write this today, I still cry. I still struggle to be happy for my friends as they have normal births and normal maternity leave. I still struggle with anxiety, to the point where it has affected my social life and career. I still mourn for the loss of the ‘normal’ experience and have never had any more children out of fear that it will happen all over again. I still can’t forget, and I still feel angry about how little emotional support there was for me. However, I am also strong, and my experience has also helped to make sure that families of premature babies now get timely help when their children are born too early or very ill. I tell my story, not to make you feel down or for sympathy; I tell it because I am proud that I used my experience to fight for change. Now, I know that support is getting better. I know that there are support groups, fast-track counselling, charities that are offering counselling sessions and I also know that my experience will now become a rarity. I can never change what happened and the impact that it all had upon my mental health, but I can change the future and I can use my voice to encourage others who are struggling with mental health problems following premature birth to demand the help that they deserve.
Isobel and Imogen are now 11 years old
With thanks to Louisa Owen for sharing her story and highlighting the mental health needs and emotional impact of premature birth.
To find out more about the mental health needs of parents following neonatal intensive care and how to support families, please see our ‘After Neonatal Intensive Care’ Report.
Maternity leave, what does it mean to you? My first experience of maternity leave started 3 months early, when I suddenly went into labour at just 26 weeks gestation. I was terrified I was going to lose my baby, her heart rate was only 80 beats per minute and my placenta had abrupted.
I went under for an emergency c section, although I ended up having forcep delivery, and we did not see our little girl for over 5 hours. She was whisked away, taken straight to the neonatal intensive care unit, where she could receive the emergency medical care she needed. Whilst we waited we put on a brave face for each other, trying to prepare ourselves and our family members for the worst. I contacted work to let them know what had happened, I know not exactly a priority at this point, but I needed to feel like I was doing something useful. Hearing the shock in peoples voices and relaying what had happened to everyone was difficult, but the support we got was amazing and will never be forgotten….
But, this was not how I expected my maternity leave to begin and I certainly didn’t expect to have a baby weighing just 1lb 11oz (770g).
When we first got to meet our little girl, I’d tried to prepare myself for that very moment. There she was, attached to a ventilator, tubes and wires everywhere, and countless syringe drivers set up for her, monitors alarming. All I wanted to do was pick her up and know that everything would be okay. The first 72 hours are critical. One of the first things a nurse said to me, who happened to be a colleague from when I had worked on the unit a few years ago, was “remember, it’s one step forward and two steps back, it will be a long journey.” This stuck with us all the way through and we will never forget that.
The staff were amazing. Having worked on the unit when I first qualified I knew only too well the risks. There were a lot of staff who were ex-colleagues, however they treated me as Mum and were very supportive to us all. Reminding me that I was her Mum, not her nurse, also explaining all medical information in a way, that as parents, we could both understand it. On maternity leave you do not expect to hear about ventilation, blood transfusions, phototherapy, x-rays, and so on.
Unable to do what families would get to do when their child is term and healthy: Not having that first family photo; not being able to change your baby’s nappy or wash them until you are told its ok to; unable to feed her; only being able to touch your baby through an incubator and for a very short period of time in case they can not tolerate being handled.
The first time I held my baby was when they changed the incubator at 1 week old. She stayed on a little nest that she had been on in the incubator, and we were so lucky to get that chance. We couldn’t cuddle properly for 12 days and even then it was when we were told that our baby was stable enough to come out of the incubator. We jumped at that chance knowing we may have to quickly hand our little girl back if she couldn’t tolerate being held anymore or the position wasn’t quite right and all the monitors were alarming… that was the start of my maternity leave. Doesn’t seem right, does it?
The majority of our family members hadn’t even touched or cuddled our little lady till we got home due to the risk of infection. We couldn’t be luckier with the support from our families, they respected decisions made and were there for us throughout the entire journey.
There are other families who had to wait far longer to do these things, everyday activities we would usually take for granted. But a preemie parent treasures every little moment they get with their baby, you just don’t know what’s going to happen the next second, minute or hour of that day. When you walk out of that door to go home for the night you wait for a phone call; a phone call that could tell you that your baby has taken a step back. Even if there is no phone call from the unit, which is a good thing, you phone through the night to get updates as it’s all you can do to feel close. Is this really maternity leave?
When I phoned through the night I was often asked what I was doing awake at that time? Well, I’m expressing of course!. I may not have been able to feed my baby directly by bottle or breastfeed, but I could express and freeze it for when she was ready. By doing this she had expressed breast milk hourly, just 0.4ml to start on day 3 through an oral gastric tube. I was finally doing something for her that no-one else could.
As our little girl kept moving forwards and defying the odds she got stronger and stronger everyday, she got us through this as she has so much strength. I sat by her incubator everyday and watched her and when we were able to we took over her everyday cares and were encouraged to take her out of the incubator when we wanted to with the nurses there to support us. It took about 8 weeks, but we were finally looking after our little girl. When we got to 9 weeks she had her first bath. At 10 weeks we were told we could start rooming in! We were so scared, this meant we would soon be taking our little superstar home, and that frightened us as she was still on monitors.
When we left the unit she had no monitors, no beeping. We had spent the entire stay learning to look at our baby, listening to the beeping and to know if something wasn’t quite right with her breathing. It’s hard to detach from this. My maternity leave so far had been a mixture of emotions, but we were on our way home, finally.
I heard that Medway NHS trust were signing up to The Smallest Things ‘Employers with Heart’ charter once we were home and I called my manager at once to see if it would apply to me since I was already on leave. They quickly confirmed it would and that I would receive the full 13 weeks and 3 days that our little girl was early as additional leave at full pay. We were hugely grateful. My manager and colleagues have been extremely supportive in so many ways, getting regular updates, plus visiting us and this was another example of the Trusts understanding and support.
What it means to us:
Of course, she is worth every extra penny spent, and more, but when you have to travel back and forth to the hospital every day, pay for petrol and parking, as well as food and drink on the go, the costs quickly add up and the extra income this provides is crucial.
Premature babies have a lower immunity so the risks of getting colds and having hospital admissions are high. The additional time helps ensure I can attend the consultant appointments, eyes and hearing checks and so on.
Our time in hospital was 11 weeks and 3 days, nothing can take away that time. However, the additional leave gives time back, previously I may have only got 6 months with her at home, now I have 9. This means I will have more chance of seeing her reach developmental milestones. If I had had to return to work when she’s 9 months, although just 6 months corrected I could miss out on her first roll, the first time she sits up on her own or crawls. I now hope to get to share these moments and maybe even see her stand for the first time.
Knowing we have got the time back that was spent in hospital is incredible, we will treasure every extra moment that we have as it has given us more time to spend with our little girl.
If you’d like to ask your employer to support staff whose babies are born premature, find out more about our ‘Employer with Heart’ charter here, or contact the Smallest Things directly at firstname.lastname@example.org
The Smallest Things are delighted to be working together with the Government Department for Business, Energy and Industrial Strategy (BEIS) to feed into their review of parental leave policy for families following premature birth.
Drawing together the views of parents, we are keen that the minister hears first hand experiences from mums and dads, just like you. Can you attend a 2 hour focus group to share your story?
The group is open for parents who have had a baby born premature (prior to 37 weeks gestation) within the last 18 months and will be held in London in late November. We are looking to facilitate a group(s) outside of London at a later stage.
If you are interested in taking part and would like to help shape future Government policy for parents of premature babies please contact Catriona directly at email@example.com with the subject ‘Focus Group’.
Medway NHS Foundation Trust was the first hospital in England to recognise the needs of staff whose babies are born premature. Signing up to The Smallest Things ‘Employer with Heart’ charter, the trust now offers extended paid parental leave for staff whose babies are born premature and the news has prompted other hospitals to make similar changes.
As Founder of The Smallest Things I welcomed the news; visiting a fragile baby on a neonatal intensive care unit for weeks, sometimes months, is terrifying and shouldn’t be counted as maternity or paternity leave.
But I also know first hand the difference it would have made to my family if my own NHS employer had granted extended leave following the premature birth of my son seven years ago.
It was a Friday morning when my waters broke with little warning. I was just 30 weeks pregnant, months away for my due date. I was getting ready to leave for work, but in a moment everything had changed. I’d not started antenatal classes, a birth plan was still weeks away and a date for starting maternity hadn’t even been set. I quickly sent my boss a text message to say I was off to the hospital and would speak soon. I hadn’t quite appreciated that “speak soon” would mean informing my HR department of the sudden and early arrival of my baby and that my maternity leave would begin the very next day.
Nothing was ready. I wasn’t ready. Within a few hours my first son had been born and taken away to the neonatal intensive care unit. “He’s doing well” a nurse told me, but I couldn’t help notice the mechanical way his tiny chest rose and fell as his life support machine pushed oxygen into his lungs. He was covered in lines and attached to machines and monitors. I waited 6 long days to be able to hold him for the first time, but even then the wires and tubes obscured his face and although I was desperate to hold him close I was terrified of hurting him as the monitors began to beep and alarm.
Those sounds stayed with me long after we left neonatal intensive care and in that I am not alone. The Smallest Things ‘After Neonatal Care’ 2017 Report highlighted the extent of mental health difficulties faced by parents of premature babies with a staggering 44% experiencing flashbacks to their time in neonatal intensive care; and yet this time, visiting a baby in neonatal intensive care is classed as maternity leave.
By granting extended paid parental leave employers are giving staff the time they need to recover from the trauma of neonatal intensive care. They are giving premature babies the time they need to grow and develop, reducing the risk of future hospital admissions and giving precious time for mother and baby, finally home, to bond. The benefits to staff and employer are clear and I am looking forward to seeing more and more NHS Trusts and employers signing up to The Smallest Things ‘Employer with Heart’ charter.
For more information about The Smallest Things ‘Employer with Heart’ Charter – see here or contact The Smallest Things directly at firstname.lastname@example.org
Over 236, 000 people have signed the change.org petition calling upon the UK Government to extend leave for all families affected by premature birth – have you?
The Smallest Things are delighted that London Mayor, Sadiq Khan, is pledging his support for staff whose babies are born premature or require neonatal intensive care.
Welcoming the news, Catriona Ogilvy, The Smallest Things Founder and Chair said,
“We are pleased that the Mayor has taken this ground-breaking step of recognising and supporting families of premature babies and that City Hall has been awarded our ‘Employer with Heart’ accreditation.
“Visiting a premature baby on a neonatal intensive care unit is a traumatic, distressing time for parents without the added worry of work and pay. It certainly shouldn’t count as parental leave. The Mayor’s new policy gives parents precious time to bond with their fragile babies outside of the hospital environment and take care of them at home for longer. We are delighted that Sadiq is joining The Smallest Things in encouraging all employers to provide extended leave to parents of premature babies.”
The ‘Employer with Heart’ charter, launched by The Smallest Things Charity in February 2018, asks employers to extend paid leave for a mother by the number of days her baby was born premature, and to offer an additional 2 weeks paid leave for their partner. Current UK legislation sees a mothers statutory maternity leave begin the day after a baby is born premature, often weeks and months before a baby is able to leave hospital.
Announcing the news the Mayor of London, Sadiq Khan, said:
“Becoming a parent should be an exciting time, but unfortunately for some parents it can also be a difficult and emotional experience. It is only right that employers give new parents the time and support they need to adjust to this momentous change in their lives and to support their return to work.
“I am pleased to set out our plans for how this can be done at City Hall, and I encourage other employers to learn from the approach we are taking and think about how best they can support new parents. London is a city of opportunity for all. We should do everything can to give hardworking and talented parents the support they need to thrive in the workplace, and the support children need to get the best start in life.”
London City Hall follows in the footsteps of local authorities such as Walham Forest, Croydon, Cheshire West and Chester, Southwark, South Ayrshire and Haringey Councils, as well as NHS Trusts including Medway Foundation Trust and Sandwell and West Birmingham Hospitals. In the summer Paloma Faith, welcoming the news that music giant Sony UK were adopting The Smallest Things recommendations, called for all UK employers to support parents following premature birth.
Find out how you can sign up to The Smallest Things ‘Employer with Heart’ charter here.
For more information, contact email@example.com
This week The Smallest Things has welcomed the news that a second NHS Trust has pledged to sign our Employer with Heart charter, extending paid leave for staff whose babies are born premature.
Leading the way in the West Midlands, Sandwell and West Birmingham Hospitals chief nurse, Paula Gardner, said “We are pleased to become the first Trust in the West Midlands to offer this commitment to parents. Our staff are dedicated to their jobs and work hard to ensure their patients receive high quality care, so we believe that we should return that sentiment by looking after them when they need our help in their personal lives. By signing up to this charter, it means that we will be able to help new mums and dads who are facing a difficult and worrying time after experiencing premature labour.”
One in eight babies are born prematurely and for mothers their maternity leave begins the very next day, weeks and often months before brining their baby home from hospital. The Smallest Things are working with other NHS Trusts and hope that more hospitals will continue to follow the lead of Medway NHS Foundation Trust and Sandwell and West Birmingham Hospitals.
Welcoming the news Catriona Ogilvy, founder and chair of The Smallest Things charity, said “We are delighted that Sandwell and West Birmingham NHS Trust has recognised the unique needs of families of premature babies and is signing up to our Employer with Heart charter.”
“Giving birth prematurely and spending time on a neonatal unit for weeks, sometimes months, is terrifying and traumatic for parents. The last thing they should be worrying about is work and whether they can afford to spend time at the incubator or cot of their fragile baby. We know that the journey often doesn’t end when a premature baby is allowed to go home either. This extra time will go some way to supporting parents’ mental health, the baby’s medical needs and ultimately aid a smoother transition back to work when the time comes.”
More information about The Smallest Things Employer with Heart charter and how to implement this at your place of work can be found here.
While you’re here – more than 229,000 people have signed our petition calling upon the Government to extend paid parental leave for all families whose babies are born premature. Will you sign and add your name? SIGN NOW!
Lena made a change to support parents of premature babies in just 7 days after her friend experienced premature birth. She said “having to return to work only 18 weeks after giving birth, when her baby had only been home with them for two months. That’s what my friend had to do. And I don’t think that’s ok for anyone to have to do at any company.”
Signing up to The Smallest Things Employer with Heart charter GrantTree have pledged to extend paid parental leave for staff whose babies are born prior to 37 weeks gestation.
Welcoming the news Founder and Chair of The Smallest Things Charity Catriona Ogilvy said “Lena was able to change her companies policy in just 7 days and in doing so she has made an enormous difference to lives of staff affected by premature birth. We are delighted that GrantTree have recognised the significant impact premature birth has upon parents and the additional time will support their staff through and after the trauma of neonatal intensive care.”
Lena told The Smallest Things “As a company we don’t want to sacrifice our happiness for commercial success and supporting premature parents at a time of need seemed a necessary and compassionate step to take. Implementing the policy change took only seven days and has been welcomed by everyone. Seeing the company embrace the policy has made me immensely proud to work at GrantTree.”
! While you’re here, more than 229,00 people have signed our change.org petition calling upon government to extend parental leave for families affected by premature birth. Will you sign and add your name?
My journey through premature birth and neonatal care began back in January 2016.
I was just 24 weeks pregnant when my waters ruptured.
Calling ahead to the maternity day care unit they told me to go straight in. They confirmed that my waters had ruptured and I was taken to the labour ward, unsure if I would progress into labour or not. I spoke to the team from neonatal care and was told that if my baby did come early wasn’t a space for him in the unit, I therefore needed to be transferred to another hospital with spaces for us both. While this was being arranged I started to bleed. It was a relief as it meant I had to stay put, I wasn’t stable enough now to move. The thought of being away from my husband & other son was just too much. But what about my baby? They reassured me that they would do everything they could to find my baby a space.
We met the NICU team and visited the NICU unit. I remember it being so calm, both quiet and noisy at the same time. The beeps – I’ll never forget the beeps.
We were told about the slim chances of our baby surviving at 24 weeks. We were asked if we wanted to ‘let nature take its course’ or if we wanted them to do all they can. That is one question I never want to hear again. There is some naivety about being in hospital. I don’t think it really crosses your mind, that ‘what if?’
I stayed I hospital for about 5 days on bed rest. My baby didn’t arrive so I was allowed home.
For the next 2 weeks I made the trip to maternity unit to get checked over every other day. I had a couple more admissions as well with small bleeds.
On Valentine’s Day 2016 I had a huge bleed. We called my midwife who told us to phone an ambulance. We arrived at the hospital at about 6pm. I was examined, monitored and scanned. They were confident that I wasn’t in labour.
It was around 8pm, shift changeover, that I was put back on the monitor. I was uncomfortable and in a bit more pain. We didn’t see our new midwife much as they were quite busy, and after all I wasn’t in labour… when all of a sudden I felt this immense pressure in my bottom along with a really strong contraction. My husband suggested that we call the midwife, but I said I was fine. Then a couple of minutes later it happened again. My husband shouted for help and the midwife came running. She had a look and could see the baby. The room filled with medical staff, it was hectic, urgent. They whisked my baby off to a room across the corridor, the room emptied.
The waiting was awful. A couple of doctors came and went asking various questions, taking blood samples. One even asked if baby had a name – Jacob.
We were told we would be able to go at around 3am to see him. By this time we were in a private room on the maternity ward. I’d showered, got dressed, phoned my parents and called my sister to check on my other son. Done as much as possible to busy my mind. 3am came. The staff on maternity called NICU to make sure they were ready for us to go round.
The walk to NICU was one of the longest walks of my life. It was the dead of night. There were no other people around. We were buzzed in and I remember we just waited at the reception desk unsure of what to do or where to go. We eventually made our way round to the sink to wash our hands and then made our way to the Intensive Care Room. There was a lot of hustle around our baby. But he was stable. He had been ventilated, he was on a drip, countless medications.
The one thing I hadn’t been prepared for when I saw his incubator was the condensation. You literally couldn’t see the baby there was so much. We opened the doors to take a closer a look. He was tiny. 2lb 3oz. His skin was red and transparent. He was bruised from his traumatic birth. I broke down. My body had done this to my little baby.
What followed was a long 11 and a half weeks in hospital. He suffered a collapsed lung, numerous suspected infections, not gaining enough weight, reflux, retinopathy of prematurity (ROP), oxygen dependency…but we got there.
First cuddle at 2 weeks old
It was so hard to start with, but once we got into a routine it became more manageable. My husband and I did separate ‘shifts’ at the hospital so we could both spend time with each of our sons. My husband still had to work, my maternity leave pay wouldn’t even cover the mortgage!
Jacob came home 10 days before his due date on oxygen. We were given the choice of staying another couple of weeks to try and wean him off the oxygen, or taking him home. We chose home. I don’t think we could have spent any more time on the unit. We needed to be a family.
Home at last
Jacob is now 2 and a half and doing well. He managed to wean off of the oxygen in December 2017. He is a feisty little bean, full of life. Unless you know him and his rough start, you’d have no idea about what pain his little body has endured.
Saying goodbye to the oxygen at 26 months
And me? Fast forward a little while to November 2017 and I had another premature baby. This time I managed to hold on to him a bit longer – 33 weeks exactly.
I’d had a pretty rubbish pregnancy with lots of bleeds. I’d re-met the NICU team at 24 weeks as I’d been admitted with bleeding. I was terrified the same would happen again.
We were told the likelihood of my waters rupturing early again were slim, so once we’d passed 28 weeks, where we’d got to last time, we were optimistic. Maybe it was just a one off last time?
Or maybe not.
I woke to my waters leaking. It was the middle of the night, my other 2 sons were fast asleep. I woke my husband, called my mum to come and sit with the children and made our way to hospital, I hadn’t even packed a bag! We were quite relaxed about it all, after all we’d done it all before.
We arrived on the labour ward a couple of hours later. I was examined and put on a monitor. We just thought that I’d be home in a couple of days as I wasn’t in labour, again.
How wrong we were.
The baby’s heart rate dropped and took a long time to recover. The room filled and I was being prepped for theatre. I’d had a placental abruption. It was happening again.
In recovery I was shown a couple of pictures of baby. He came out screaming. He was in NICU, but was breathing on his own. He weighed 3lb 12oz.
It was about 6 hours before I was wheeled round to see him. On the way all the staff in NICU congratulated me, told me how beautiful he was and how well he was doing. It almost felt like I’d come home. From our last baby we knew most of the staff. We knew the unit, everything was familiar.
They got my baby straight out of his incubator for me to cuddle. I couldn’t believe I’d got my first cuddles already. He really was ok!! We called him Oliver.
Holding Oliver for the first time
Due to his gestation he didn’t need the scans and tests that our last baby had had. At 33 weeks he just needed time to grow and put on some fat. But during our time in NICU Oliver had trouble maintaining his temperature so he spent longer in an incubator.
Baby Oliver spent longer in his incubator
Obviously home was on our mind. I never asked when they thought he might get to come home – I already knew the answer – aim for his due date. But his due date wasn’t until January. How was I supposed to give Christmas to my other boys and have a baby in hospital? As far as I could see there was no medical issues. We needed to establish feeding and get him to gain some weight. The nurses were fantastic and knew we wanted to be home for Christmas. They pushed Oliver with his breastfeeding and arranged for me to room in sooner rather than later and we made it home, all together for Christmas.
Oliver is 9 months old
Oliver is now 9 months old and doing well with no obvious complications from prematurity.
Jacob and Oliver
Both of my babies journeys in neonatal intensive care were so different. For me the second time around was the hardest. Having that knowledge of what goes on, what to look for, what to do, what can happen – it didn’t help, for me it was worse.
The work that the doctors and nurses do is absolutely incredible. There aren’t enough words to show your thanks and appreciation for all they do, not only for the babies in their care, but also for the families of those babies. I will never forgot our journey through neonatal care.
Written by Hayley Petts
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Medway NHS Foundation Trust has become the first in England to sign up to The Smallest Things ‘Employer with Heart’ Charter, pledging its commitment to support the needs of premature babies and their families.
Current NHS terms and conditions afford new mums whose baby has been born prematurely to split their maternity leave, allowing them to take two weeks leave immediately after childbirth, and the rest following their baby’s discharge from hospital.
One in eight babies are born prematurely and subsequently parents have a reduced time to bond with their baby with the period from birth, to discharge for babies born prematurely typically being several weeks, or even months. The Trust has therefore taken the step to support new mums in this intervening period by committing to ensure they receive their normal pay up until the point that their normal maternity pay commences.
James Devine, Deputy Chief Executive and Executive Director of Human Resources and Organisational Development said: “We are proud to have become the first NHS Trust in the country to sign up to the Employer with Heart Charter.
“Our staff work tirelessly every day to look after our patients and we want to ensure that they also receive the support that they need when they have difficulty in their own personal lives. We know that this will affect only a small number of our staff each year, but it is so important that we care for those who are caring for others.
“We understand that it can be an extremely difficult and worrying time for those who experience premature labour and the last thing we want is for our hardworking staff to feel they have to worry about work or whether they can afford to take time off to be with their baby”
Catriona Ogilvy, founder of The Smallest Things, said: “We are delighted that Medway NHS Foundation Trust has signed up to our Employer with Heart charter and will give parents of babies born prematurely the extra time they need. Visiting a fragile baby on a neonatal unit for weeks, sometimes months, is terrifying and shouldn’t be counted as maternity or paternity leave. This extra time will give parents more chance to bond with their babies, take care of them at home for longer and recover from the trauma themselves.”
We had suffered the unimaginable. I will never ever know how we survived Blake, but what I did know was I was in an extremely dark place alongside Graham, my husband, and my mum. I was very concerned about both of them, every minute of every hour. It kept me going in a strange way, I kind of put myself to one side. I suppose this was self preservation at it’s very best.
How does anyone know how they would react to such a horrendous life even? It’s unbearable to even think about it. We live this every single day and will do for the rest of our lives. To this very day, I haven’t fully accepted that our beautiful Blake lost his life and I now know that I never will.
Blake, born at 30 weeks, in Neonatal Care
Blake suffered from an enlarged heart which took his life aged just 5 months old.
I couldn’t even begin to process what had happened for such a long time. I didn’t return to work for 10 months and couldn’t do so until we had the inquest and learned what had happened to our boy. How does a parent begin to cope with watching their 5 month old baby die in a bay in A&E surrounded by staff trying to keep him alive, battling so hard to save his life, only to watch them fall apart from when he became unresponsive. When I say fall apart, what I mean is they were immensely professional but naturally devastated. I entered a world that I never knew existed, a big black bubble of hell. It’s an indescribable place. I wanted to lie down and die, but I also knew that I didn’t want my son to ever feel responsible for something so harrowing. That may not make any sense to you, but it makes perfect sense to me. The human mind is a complex thing and my mind had convinced me that I had been in an accident, that I was in a coma and all of this was a dream.
I knew in my heart that I wanted to try again for a sibling for Blake, but I couldn’t bare experiencing any more heart break. As we awaited the inquest and I started to make tentative steps in contacting the IVF clinic. We faced a decision of remaining childless on earth or taking the huge risk of trying for another baby. I was determined to get us there, it’s not natural to have empty arms after becoming parents, it’s beyond life changingly painful, so our journey for Flynn started.
Our first IVF cycle was a success, but unfortunately I suffered a chemical pregnancy and the pregnancy did not continue. Naturally we were devastated and I had to wait a couple of months to try again and a further 2 months of daily injections of fertility drugs. Round two was successful and resulted in a healthy pregnancy!
After a very anxious pregnancy Flynn was born at 32 weeks gestation weighing a tiny but healthy 3lb 90z.
Flynn, born at 32 weeks
History repeated itself in more ways than one. The prematurity, the delivery, the fear for our new born son and the fear of his medical checks. We knew Flynn would be admitted to NICU, but this time we knew what to expect and we were familiar with the staff and the journey, which was a huge comfort.
Our NICU journey
The staff on the unit were delighted to see us. They had been aware of what of Blake’s death and they were delighted to see that we had found the strength to have another child. After all, they loved Blake all his life and now they were looking after his sibling, Flynn.
Being born prematurely, Flynn had to endure the same as Blake on NICU. He suffered with jaundice and received phototherapy, he was unable to regulate his temperature so his little home was an incubator and he was cuddled up to IV’s and lines and fed through a through a tube.
Incubators, wires and feeding tubes – starting life in Neonatal Care
Flynn was doing well, but needed time to grow. We didn’t ever get used to having to go home without him every evening. It didn’t feel right, but we knew he was receiving the best care possible and we couldn’t have wished for a better team to care for our precious miracle.
We came to learn early on that there were no obvious medical problems for Flynn. A huge relief beyond words, but it was very hard to process and believe. We’d lost our first son to a heart condition and I couldn’t understand how our second child could be so healthy, it felt too good to be true. We were discharged home from NICU after 4 weeks. Like Blake, Flynn was tiny on discharge, but we felt much more confident with a tiny baby at home the second time round.
Discharge from NICU
On the outside we looked like we were coping so well after what we had been through, but on the inside I was paralysed with fear on a daily basis. Once home we received support from the Neonatal Family Care Specialist Nurse. She knew us well and it was very easy to discuss our fears with her. Things that are normal in babies, just those little things like facial expressions and the fast heart rate etc. had me in a constant state of panic. I knew it was normal but our lives were the polar opposite of ‘normal’ and I just couldn’t relax.
3 months after being home, I was home alone with Flynn and he was sleeping. I looked over at him and he looked extremely pale and his breathing had changed. I panicked, tried to reason with myself but couldn’t. I picked him up, he was floppy. His heart rate was much faster than normal and I just knew something was not right. Graham arrived home from work very quickly and took us to straight to Kings Mill ED.
Immediately on arrival to Kings Mill a nurse came from behind the reception and said
“your baby looks very poorly”. She took us straight through. Nothing could have prepared us for the fact that Flynn was placed in the same bay where Blake died.
Flynn’s heart rate was low and dropped whilst we were there. Once again I was paralysed with fear. Graham was trying his utmost to keep me calm but I just couldn’t see that the outcome of this would be a good one. The doctor came to see Flynn and we were admitted to the Children’s Ward for assessment. My fears should have lessened as we were out of A&E but still I just couldn’t see that we were going to get Flynn home.
He was monitored over a few days, and those few days were horrendous for me. I was absolutely convinced that it was his heart and that he was suffering the same as Blake. Lots and lots of reassurance was given but I just couldn’t accept that it wasn’t his heart.
It turned out that Flynn was suffering with silent reflux and had had an apnoea episode. Following this diagnosis the silent reflux became very evident. Of course there was much relief that it wasn’t heart related but I still couldn’t be convinced or could allow myself to be reassured. Blake had suffered mini heart attacks leading up to his death and all I could think was it was the same.
Flynn continued for the first year of his life to suffer with silent reflux and it was very distressing. Initially there were days that he would scream in pain for 9 hours a day and it took some time to stabilise his suffering, trying different feed options and medications, but we got there in the end.
Flynn is now medication free and those days of seeing him in so much pain are a distant memory but I will never ever forget how very hard those days were. Flynn’s Paediatric Consultant is amazing on so many levels. Having a good Paediatrician behind us has been paramount to our mental health. He is aware of the issues surrounding Blake and has offered so much parental reassurance as and when required. I could never express to him just how much he has made our journey with Flynn much smoother, lighter and less of a worry. We will always be very grateful to him.
It’s still hard for me to accept that Flynn is medically well. I still struggle to understand that my first born child died of an enlarged heart and that Flynn has no heart problems. I know he’s a different child but I live on tenterhooks most of the time. I try to keep it hidden as much as possible, but every time we face a simple childhood illness it flares up again.
Flynn is a very healthy 30 month old and brings rays of sunshine into our lives. He is a ball of energy and infectiously adorable. He really is an absolute treasure, a miracle. There will always be Blake missing from our lives, every second of every day, but we have learned to carry this the very best we can. We didn’t just lose a child, we lost a baby, a toddler, a teenager and an adult, everything he was going to be. The most heart breaking feeling is that he also lost us and his whole life he fought so hard for.
Blake home from hospital, precious memories with his mum
Flynn, building happy memories with dad
With special thanks to Haley for bravely telling the stories of brothers Blake and Flynn and for sharing with us her heartbreak, joy and ongoing and long lasting worries.
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If you have a story of premature birth and neonatal care you’d like to share, please contact Catriona at email@example.com
Graham and I were in Warwick for the weekend when I went into labour with Blake. At 30 weeks gestation I put the labour pains down to all sorts of other possible reasons as I didn’t once consider I was in labour. Graham had started to time my pains and quite soon on they were 10 minutes apart. We contacted the maternity unit and was told to go home and take paracetamol, but something was telling me to go straight to the hospital. I was frightened that something was wrong. We started our journey to Kings Mill Hospital in Nottinghamshire, we didn’t want to be out of area if we were to admitted to hospital. Contractions were becoming more frequent and so was the panic and concern for our unborn child.
Once at the maternity unit, I was put on the CTG monitor and tested for infections. An hour into being on the maternity ward my waters broke and our beautiful, tiny baby boy Blake was born two hours later.
The neonatal team were on standby whilst Blake was delivered and they took over in a way that calmed me. I could immediately see that Blake was in the hands of experts. I will always remember the doctor that took Blake and placed him in the incubator, he was so calm and collected in the chaos of the situation.
We were in total and utter shock, I had never known anyone to have a premature baby and I just didn’t know what to expect. My first feelings were ‘how can our baby survive being born at 30 weeks and what will he have to go through? All of this was very new to us and we just couldn’t comprehend what we were about to face.
Blake was cared for in neonatal intensive care for 6 weeks in total.
We were terrified, in shock and delighted that our son was safe and that we could see him…. but could also foresee he had a long road ahead of him.
I had been in theatre after giving birth to Blake and had an epidural which meant that I couldn’t see him for the first 6 hours. I could only see my new born son in the pictures that Graham had taken on his phone. I couldn’t wait to meet Blake and the staff who I would spend every day with for the next 6 weeks. On entering the ward to meet Blake for the 2nd time I was going through an array of emotions and one of the nurses said to me “congratulations”. It took me back a bit as it was like the focus was on the negatives at this point and just by her saying that to me put a huge smile on my face.
Blake appeared to look quite a size on the pictures for a 2lb 7oz baby, but nothing could prepare me for how tiny and vulnerable he was.
Feelings of guilt soon set in. I felt let down by my own body, I wondered if it was age related (36), I thought of all possibilities, I just couldn’t understand why this had happened.
I had to inform my employer and colleagues that my maternity leave had started approximately 8 weeks early. They were still working on sorting a secondment to cover my maternity leave and my department was already under immense pressure with a heavy work load. Although otherwise engaged I was concerned for them. They were amazing and very supportive, and of course they were concerned about Blake and what progress he would make. It’s easy to detect what is at the back of people’s minds ‘will he survive being born so early?’. It’s a question I asked myself constantly. I of course didn’t know the answer to this, nor was I qualified to fully understand what he may face medically.
It was soon revealed that Blake had a ventricular septal defect (VSD), a hole in the heart. It is a common heart defect that’s present at birth (congenital). After further tests the Cardiologist was happy that Blake wouldn’t need any intervention until nursery age.
The medical staff were simply amazing, nothing was too much trouble for them. Always more than willing to explain things to us and answer any questions and concerns we raised. Blake’s Consultant sat with us at length to explain Blake’s heart condition.
The Consultants without doubt are extremely busy, yet we never felt rushed by them. I always describe the nursing and medical staff as “angels without wings”. They are special and I admire them and what they do very much. They are on the edge of life and death every day and they also have worried parents to look after.
As we watched Blake experience bradycardia’s, tube feeding, jaundice, living in an incubator unable to regulate his own body temperature, surrounded by machines and wires the one thing that always struck me was the amazing staff and how they are just like a family. At such a distressing time the staff made our journey much more bearable.
Parents can be very hands on in NICU. You do cares, tube feeds, bathing and as much cuddling as the staff will allow. I was always terrified as Blake was so tiny, but you receive constant support.
We stayed with Blake in NICU approximately 16 hours a day and only went home to sleep. The hardest part for us was always going home. Of course parents are encouraged to go home and rest, but it’s so hard to do. I was expressing milk at 3am, ready to take in with me the next day. It felt so unfair, it was so unnatural to be away from your precious baby.
Graham returned to work after 2 weeks and it was such a difficult time. Graham is a diamond, an amazing dad and extremely supportive. His absence was felt and I just couldn’t wait to see him back on the unit at the end of his working day. His big beaming smile when he arrived on NICU was always very heart-warming. I don’t know how I would have survived this without Graham and my mum, they were my rocks. My mum and her partner Steve were always there for us and helped us in so many ways.
From Blake being delivered to being discharged, our journey on NICU was a huge emotional rollercoaster, but also an incredible experience and we were blessed to have such a beautiful and strong little soldier.
The NICU journey is very hard to imagine and understand unless you have experienced it. It changes you. It makes you realise how fragile life can be. It puts you on the edge of your nerves every day and when you get the news that you can take your baby home along comes more feelings of delight mixed with terror. NICU had been a safety net for so long, it was hard to imagine being without the experts and caring for our tiny baby at home.
On discharge Blake weighed just under 5 pounds. The main part of my fear was the size of Blake, he was so tiny, so fragile and vulnerable. I couldn’t even imagine him in a car seat, I could hardly breathe on our way home, I was so scared.
Sadly, Blake died at 5 months old. He had an enlarged heart, which wasn’t revealed until we had the inquest 10 months later. It’s a very long and complex story, but our rainbow baby, Flynn, is now 30 months old and thriving. Both our boys were conceived via the wonderful science of IVF so after losing Blake and deciding to try for another pregnancy we knew we would have to face another uncertain battle. There’d be more heartbreak. Flynn was born at 32 weeks…
Mum to identical twins and Tamba volunteer, Linsey Wynton, on how her employer, Waltham Forest Council, has introduced extended maternity leave to parents of premature babies.
Five years ago when I gave birth to identical twins, 11 weeks early, I had no idea I would be involved in publicising a campaign to bring about fairer pay for parents in similar circumstances.
Linsey shares skin-skin time with her twin boys in neonatal intensive care
Fast forward to 2018 and I am in Broadcasting House, with the Deputy Leader of the council I work for as a press officer in Waltham Forest. He’s Councillor Clyde Loakes and he is about to announce a trailblazing change on BBC Woman’s Hour.
Our council is – we believe – the first employer in the country to offer extended maternity and paternity leave to parents of premature babies for the duration of time they spend in hospital up until their original due date.
“It’s a small thing we can do that will make a huge difference for families. I don’t understand why more employers don’t do this,” Cllr Loakes has told me. And he explains to Woman’s Hour presenter Jane Garvey: “We can wait till the cows come home for Parliament to legislate. But this is something we can do now.”
Linsey Wynton, Sarah Miles and Cllr Loakes at the BBC promoting Waltham Forest Council’s new initiative
We were joined by campaigner Sarah Miles, a trustee of The Smallest Things Charity, which wants the law to be changed so employers are required to offer extended paid maternity and paternity leave to all parents of premature babies. A petition by The Smallest Things calling for this has secured over 1850,000 signatures so far.
Sarah’s story moved me to tears. Six years ago she gave birth to twin girls 12 weeks prematurely. But she had no idea that her maternity leave from work would start the very next day.
One of Sarah’s twins, Charlotte, spent three months in hospital. Her other twin, Eva, was in hospital for six months and sadly passed away.
Sarah’s maternity leave was so different from what most new mums expect – months spent visiting a neonatal unit, listening to the constant beeping monitors, willing her girls to pull through and come home. She went through so many ups and downs, meeting parents along the way whose babies eventually thrived and others whose babies tragically died.
Soon after baby Eva’s death, Sarah was asked by her employers at the time if she would be returning to work. Because of her recent bereavement, and still having a very tiny baby at home, Sarah requested unpaid leave.
“I was not ready to go back to work. 40% of mothers of premature babies experience postnatal depression, and a report by The Smallest Things last year revealed 63% of mums of premature babies experience anxiety and 44% have flashbacks. I was suffering from all of these,” explained Sarah, who is now also a Tamba volunteer with the Bereavement Support Group.
Her employer was not sympathetic. In the end, Sarah had no choice but to resign from her job. She joined forces with other mums who had had premature babies, including Smallest Things Founder Catriona Ogilvy, whose first son Samuel was born 10 weeks early.
Catriona’s local MP Steve Reed introduced a Prematurity Bill to parliament, which called on government to extend paid maternity and paternity pay to parents of premature babies. Unfortunately it was dropped at the second reading. However, following a meeting with The Smallest Things, Bliss and Steve Reed, Business Minister Margot James MP requested guidelines be drawn up on how employers can best support parents of premature babies. The ACAS guidelines were published in March 2017 and was the first time the unique needs of families of premature babies have been acknowledged in employer guidance.
However, changes need to be made not just by employers, but in terms of statutory maternity allowance given that one in seven people in Britain is self-employed.
When my twin babies were born 11 weeks I was self-employed and so was my husband. So I was I was only entitled to 9 months statutory maternity allowance. At that time it was only £135 a week. And because I had been very unwell, with a diagnosis of acute and severe Twin to Twin Transfusion at 24 weeks of pregnancy, my payments ran out by the time my twins were six-months-old. With an older son also, and the lack of subsidised childcare, it was not viable for me to work until my twins were three. So as well as the sheer exhaustion, it was tough financially.
Linsey was not able to return to work until her twins were 3 years old
All I can hope is this small change that my employer has made will be the start of something much bigger for other parents in my situation in future. Cllr Loakes is now talking to the council’s contractors, which include Kier, who provide our refuse service, and partners, which include Whipps Cross Hospital. He wants them to make a voluntary change to support new parents of babies born prematurely.
Our story has had a lot of coverage, including an article in the Evening Standard, an item on BBC Radio London and TV coverage on BBC London and ITV London News. Hopefully it will be the first of many victories for The Smallest Things.
If like Linsey you’d like to ask your employer to extend parental leave for parents affected by premature birth, download our letter for employees and ask them to become a Smallest Things Employer with Heart by signing up to our Charter of Best Practice.
One thing I never knew when I was pregnant was that I could have a premature baby.
It just wasn’t something that I knew about and it wasn’t something that I knew happened to people…. until now.
I was 30 weeks pregnant and I had been experiencing a pain under my rib cage on the right side of my body. It was about 1:30am and I got up, took some painkillers and tried to go back to sleep. I was still experiencing some pain, but it wasn’t excruciatingly sore, more like a dull pain, so I just got on with it. I thought it was maybe just the baby kicking me in the ribs.
Throughout the morning it was much the same, just a dull pain, nothing more. By lunch time it was still there and got a little more intense, but nothing that I was crippling over in pain. I decided to call the midwives at my local hospital for some advise. Due to my gestation they asked if I could come in just to get checked over.
When we arrived I was hooked up to a machine to measure my contractions. Whenever I was experiencing the pain it wasn’t showing as a contraction and I felt a bit silly being there at that point. As they didn’t really know the cause of the problem the midwife called for a doctor. He examined me and told me that I was 3cm dilated!
Time was a blur from then on.
No one can ever prepare you for the mix of emotions that you experience at that point. Sadness, worry, fear, confusion.
The doctor was trying to arrange transport, either an ambulance or a helicopter to transfer me to a hospital with better facilities for a premature baby.
My waters decided to break though and we no longer had the option of being transferred. I was to deliver where I was.
A doctor came and explained that there could be a chance the baby might not survive, particularly as they didn’t know the reason to why I was delivering early, and we would be best to prepare ourselves for that.
A few hours later, my baby was born weighing 3lbs 9oz.
I got to look at him for about 10 seconds before he was put in an incubator and taken away. He was perfect, just tiny.
He was born at 7:30pm, but we weren’t allowed to go and see him until 11:00pm.
It was the longest wait of our lives. We were just in a room not knowing what was going on. Was he okay? Was he going to survive?
When we got to go and see him it was very difficult to watch. A doctor was stood over his incubator manually pumping air into his mouth to help him regulate his breathing.
Our son got transferred to another hospital at 1am and we were discharged the following morning and headed up to be with him.
He progressed every single day, and amazed us all. He moved onto a C-PAP within a couple of days and started off by taking 1ml of milk per hour! He had episodes of jaundice, but they didn’t last very long before he was back to normal.
It was hard to look at your baby lying in an incubator with the tiniest nappy I’d ever seen, with all sorts of wires going into him.
I’ll also never forget the beeping from the machines around him, I can sometimes still hear them.
The nurses were amazing, and really are a credit to the hospitals. I actually don’t think they get as much credit as they should. And I will never forget when our son stopped breathing for around 20 seconds…. (but it felt like a lifetime for us.) My partner and I were panicking and not knowing what to do, the nurse on the other hand was so calm and just held him, talked to him and tickled his feet and he started breathing again! I couldn’t believe it, I was so amazed. I think this was the moment when we knew he was going to be cheeky!
One thing that I never got to experience was the moment you get to hold your baby straight after giving birth. It was so difficult, you kind of feel disconnected to your newborn in a way. We had to wait 6 days before we could actually hold our son.
The moment was amazing, and I will remember it forever, but I just wish it could have been different. We had to be so careful with him and could only hold him sitting right next to the incubator as he was attached to so many different machines.
I would say that one of the hardest parts of having a premature baby is when you had to leave them in the hospital and drive home without them. I would look over my shoulder into the back seats and just wish he was there. It just felt unreal, or that your baby didn’t exist, because he should be with you wherever you were.
It annoys me when someone says “you’re lucky, at least your birth was easy and that you didn’t have to push out a 10lb baby!”
Trust me, I was not lucky. I would much rather of pushed out a 10lb healthy baby than have a traumatic birth and an ill baby.
So, I just want to raise awareness that if you’re in doubt about anything, go and get you and your baby checked over to prevent delivering early. I think back to that day all the time… what if I just got through the pain and stayed at home, what if I gave birth in the car on the way to the hospital… the list is endless.
I actually experienced the same pain under my rib cage about a week after giving birth. This time it was a very excruciating pain that wouldn’t go away. I went to A&E and I had pancreatitis, brought on by gallstones so I had to have my gallbladder removed. We think this was the reason why our son was born early as the doctors couldn’t find any other reason.
Our son spent a total of 6 weeks in hospital and is now a healthy 20 month old who is meeting all his milestones, apart from he has a delay with his speech. He is an amazing little boy and we are so thankful to have him in our lives.
Guest post by Robyn McIntyre
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Up until that point my pregnancy had been very similar to that of my daughters three years earlier. I had constant morning sickness so was medicated and felt pretty awful most of the time, but I’d carried Sally to term and had a natural birth with a wonderful outcome so saw no reason why this time anything should be different.
Alfie arrived very quickly without any real warning. He came 17 minutes after arriving at the hospital by ambulance and my husband was unable to be there as he was arranging care for our daughter.
I went into complete shock.
I wish now that we’d known Alfie’s gender beforehand, he was born with his placenta attached and even the vast medical team didn’t know his gender for 10 minutes as they worked to stabilise him.
I coped by detaching. I can still vividly remember and feel guilty everyday for the fact that during his rapid birth I focused on our daughter. I pictured her in my mind and reminded myself whatever happens I’ve got her. My mind continued to cope by focusing on her for at least the first 48 hours.
Alfie was transferred to a specialist hospital 60 miles away and we followed. I’d never left Sally over night before so was tormented by thoughts of her distress and just wanted to get home to be with her, but when I did the following day I felt judged for doing so by all but one wonderful nurses.
I returned within 24 hours and continued to do 48 hours with Alfie followed by 24 hours with Sally in shifts with my husband until Alfie was transferred back to our local hospital 18 days later.
I had bonded with Sally instantly when she was born, but she as been handed to me the second she was born and had barely left my arms in the days, weeks and months that followed. I got to touch Alfie’s tiny, tiny hand briefly as he was whisked away and then all contact was controlled, monitored and terrifying. Even the first time I held him after 13 days was hard as my instinct was to rock and stroke him but that was not allowed.
I tore myself in half to spend time with both of my children everyday but never felt I was giving either of them enough. When Alfie finally came home along with his oxygen my body and mind caved in and I suffered severe stress induced IBS and debilitating anxiety, not helped by him being readmitted with pneumonia and a collapsed lung 5 weeks later.
I struggled on exhausted and carrying the guilt that I had not bonded with Alfie straight away until I went to see my GP as I reached breaking point. To the outside world I hid it well, but that is not always a good thing. She got me counselling which identified that I had PTSD and post natal anxiety. It helped but I was still struggling and in the end agreed to try medication and wish I’d done it months ago. I still get anxious but I can manage it now and my IBS has reduced massively. I can look at things rationally now and know deep down that what matters is that I have bonded with Alfie not how quickly that happened.
I still feel haunted by his birth and first year of life, but I know now that I’m not alone in these feelings and that helps a lot.
The NICU experience does not end at discharge and everyone copes in different ways, but just because someone appears to be coping do not assume they are and just be there to listen and support.
So much of the ‘normal’ birth experience is stolen from parents of premature babies. On World Prematurity Day we’ve teamed up with Pampers to raise awareness of the different journey through NICU
…fear. One of the overwhelming emotions you’ve told us you feel. Seeing your baby for the first time in an incubator, covered in wires, surrounded by bleeping machines, face covered by breathing apparatus… this isn’t how it’s supposed to be. What happened to the birth plan? For me, like many parents of premature babies, I watched my babies being whisked away to be resuscitated in the neonatal unit.
…finding a new hero. Watching my babies struggle and fight to put on weight, get over infections, breathe, grow, and eventually thrive filled me with awe and respect for their strength. They really are my heroes.
…a rollercoaster ride. As parents on the unit we’d often say it was one step forwards then two steps back. One day you’re celebrating your baby coming off oxygen and the next she’s back on CPAP because of an infection. The ups and downs are emotionally gruelling.
…changing your first-ever nappy through portholes. One of the most wonderful times in NICU was changing my daughters’ nappies and doing their ‘cares’ as it made me feel like a real mum. Six years ago I bought the smallest nappies available – Pampers size 0 – yet even they needed folding over and reached up to their armpits. I was really pleased to hear that Pampers has created a new range for babies weighing less than 1.8lb (800g) called the Pampers Preemie Protection Range and pledged to donate 3 million nappies to neonatal units around the UK & Ireland.
Since the launch of Pampers Preemie nappies, 61 of the 208 neonatal units have received their packs, with over 100,000 free nappies donated to neonatal units across the UK and Ireland.
…learning a new language. You quickly learn to ‘speak’ NICU and get your head around the acronyms. From NGT to CPAP via NEC, PDA, EBM and ROP, I can still remember them all six years on. To this day, I get asked if I’m a medic when I take my daughters to appointments. Nope, I’m a NICU mum and I know too much.
…celebrating the baby steps. In NICU it’s the small stuff that matters. I waited two weeks before I could have my first cuddle with my youngest daughter and I will forever cherish that moment. I remember the first day they were able to wear clothes, how every gram gained felt like a huge success, and going up a nappy size deserved a fanfare. Reaching these premature milestones meant they were one step closer to coming home and becoming mine properly. Here at The Smallest Things we love these cards created by Pampers and Bliss, which will be distributed for free to neonatal units across the UK .
…#NotMatLeave I found out weeks later that my maternity leave had started the day after I gave birth three months early. So those 197 excruciating days spent on the NICU all counted towards my maternity leave, meaning I had very little time at home before I was expected to return to work.
…having two ages. The innocently asked playgroup/bus-stop/passing-time-in-a-queue question I learned to dread: how old is she? No simple answer without a long story. She has a birth age and a corrected age. It’s complicated.
…Not over when you walk out of the NICU doors. Shortly after the euphoria of finally leaving the hospital and going home, comes the realisation that it’s not really over. Frequent medical appointments, hospital readmissions, and uncertain long-term outcomes are the reality for many NICU parents. It’s unsurprising that 63% of mums experience anxiety after being discharged from the neonatal unit. Almost half of premature babies have ongoing medical difficulties after leaving hospital.
In support of Bliss’ social media campaign, tell us what #PrematurityIs to you below or on Facebook, Twitter or Instagram using the hashtag #PrematurityIs and tagging Pampers. For every story shared, Pampers will donate £1 to our friends at Bliss!
Pampers has donated the fee for this post to The Smallest Things.
What can only be described as what should have been one of the best chapters of our lives started off as one of the scariest time of our lives.
It’s something you think could never happen to you.
Delivering your precious baby 8 weeks and 4 days early. Completely unexpected, the baby you’ve been carrying, getting excited about, your new life ahead….
Then the doctors tell you ‘he’s a tiny 2.13lb’.
They take him straight off you, they recusiate him, they put him straight into an incubator with a oxygen mask on.
He was so brave, yet so fragile.
It’s the complete opposite, directly at odds with the feeling you had been expecting.
I felt robbed of my pregancy.
Robbed from everything I should have expericed.
I felt like I didn’t get the chance to be and to feel like a new mum.
Every day Ted was in the hospital we didn’t quite know what to expect or what we would be told on the ward round each morning.
Ted was just 1 week old when the doctors called us aside to tell us he’d had a bleed on the brain.
As young parents we couldn’t quite grasp everything at once, everything that was happening.
He was struggling with his feeding, struggling to gain weight and he was so up and down. He then had the bleed on the brain, fluid on the brain and everyday was so different and daunting.
We stayed in the Ronald Macdonald Suite in Arrowe Park hospital for around 5-6 weeks while Ted was cared for in the Neonatal Unit. They told us he would probably be kept in until at least his due date unless anything improved and it seemed so far away.
My partner Chris went back to work and I just continued to in the hospital, counting down the days. It was the most bizare time of our lives. We joked it was like living in the ‘big brother house’, but the atmosphere was so quiet and lonely. We knew everyone there were going through one of the toughest times of their lives and we didn’t really want to engage in one another, not knowing what news they had just recieved downstairs.
The staff in Ronald Macdonald really couldn’t have been any more comforting and welcoming, and the doctors and nurses in the neonatal unit we can’t thank enough. We owe them so much, without all the help they put in daily we wouldn’t be where we are today.
Weeks passed and Ted was jumping rooms from Intensive care to High Depenacy and finally into the last room ‘The Nursery’.
The feeding tubes slowly came out and the hot cot was introduced. He finally started to look like what some people would describe ‘a normal’ baby, ones without wires or tubes all over there bodys, ones you aren’t scared to hold or touch.
People think that once you leave the hospital it stops there, that everything goes away and it’s all happy.
That’s not the case.
I couldn’t shake the feeling from my stomach that someone was going to take my baby away from me. I guess a little bit of me still can’t now and that is where 8 months in it hit me like a ton of bricks. I suffered hugely with anixety, another thing I never really knew about before.
Ted was one and we finally got discharged from the hospital all together. That meant no more appointments and we could put some of the memorys to the back of our heads now we weren’t going back to the hospital and being reminded. Being told they was more than happy with his progess and he could be discharged was another one of the happiest days of my life, we joke but Ted actually clapped when the doctor told us, right on cue!
Here is Ted-Joseph our hero 2 years & 4 months on.
A little man who walks into the room and lights it up – cheeky, happy and full of mischief!
I feel as a prem mum that it is NEVER too late to speak out about how you are feeling and you’re never alone. So many other people have been or going through the journey others have been on. Together we are strong.
It’s NEVER too late to raise awareness for these tiny precious little miracles, the ones who pull through, and the ones who are taken too soon.
World Prematuirty Day is on November 17th – will you share Teds story and help raise awareness?
If you have a story to share, contact Catriona at firstname.lastname@example.org
On Sunday evening, at 7pm, thousands of candles will be lit around the world to remember all the babies who have died. As Babyloss Awareness Week culminates in the Global Wave of Light, bereaved parents, friends and family come together to remember. Each flickering flame represents a tiny soul no longer here, a story of hope that ended in pain, a life not lived, enduring love translated as grief.
Eva Sophia Boyle
My own flickering flame will burn in memory of Eva, my daughter who died on 23 February 2012 aged six months following surgical complications and 197 long days in NICU. There will always be one missing from my family and there are days when living without watching Eva grow up feels like a life sentence. But I must go on. For my living children, and for Eva. She didn’t get a chance at life so I owe it to her to live mine to the full and to seek out the joy.
Ways to remember
For us bereaved parents, remembering our babies is all we have. So we find ways to commemorate our babies, to make sure their memories live on. We let off balloons on anniversaries, engrave plaques and pebbles, stitch quilts, hang stars on trees, make cakes, tell others, share stories, write blogs and light candles.
And it helps. It has helped me. Eva has inspired me to climb mountains, raise funds, start running, become a befriender, speak out and try to improve care. She’s doing amazing things despite not being here. Eva has introduced me to a wonderful, supportive community of similarly heartbroken parents. There is comfort in coming together with others who have lost babies. It’s a club nobody wants to join but when you find yourself sleepwalking through its doors, you’re so grateful it’s not empty and you’re not alone.
So on Sunday I invite you to light a candle at 7pm and let it burn for an hour, in memory of all the lost babies and also to show hurting parents they’re not alone. Please share your photos and tell us the names of babies you’re remembering.
Eva Sophia Boyle, this blog is for you.
Eva’s sisters, Iris & Charlotte #WaveofLight
This post is also dedicated to Gia, Noah, Seamus, Laura, Charlie & Joshua, Heidi, Abigail, Bobby & Ryan, Sam, Jacob & George, Ethan and all the babies gone too soon. Always loved, always remembered.