Category Archives: News

What makes a preemie parent angry?

What makes a preemie parent angry?

  • Sweeping statements and generalisation?
  • No accounting for parents views?
  • Misleading newspaper headlines?

Or perhaps all three?!

Today on the Smallest Things Facebook page we shared a newspaper article with the leading title “Premature children should be treated as ‘Special needs’ pupils”. We asked you for your thoughts, and in the main you were angry.

“I totally agree that Teachers should receive relevant training on Prematurity (as should a lot of Healthcare professionals for that matter!) but to class a child as special needs based on Prematurity alone seems ludicrous. Surely each child should be assessed on an individual basis.”

“All children learn at and in different ways, every child should have the right to the schooling needs as an individual, not because they were premature, my eldest was a premmie and she didn’t need extra help, my second was a preemie and she needed extra help. It all depends on being an individual instead of being institutionalised into one way of thinking”

“Surely every child deserves to have their needs assessed on an individual basis. This is such a generalisation!!!”

“Each child is different. Your child’s strengths and weaknesses become apparent as they grow and develop and labels are given too often these days.”

“No way! Only one of my three prems is behind in development. They should be assessed as individuals”

These are only a small selection of your comments; you can read all the responses we have received and add your own by clicking here.

In a statement, Bliss Chief Executive Caroline Davey has said:

“We know from previous research that children born prematurely are at greater risk of behavioural and learning difficulties, and we think it is absolutely essential that, as this research suggests, children born prematurely should have more support when starting school, and that teachers should be adequately trained to deal with these children’s needs. 

“However, we continue to believe that it is up to parents to decide if it is right for their child to delay starting school. Every child born prematurely has different needs based on a range of factors, and while one child may be ready to start school with their peers, another may not. Our evidence supports this, and we are confident that with the right care at birth and support throughout their development, children born premature can reach their full potential.”

It is encouraging to see that the response from the UK’s leading premature baby charity echo’s so many parents views and is testament to the work that they do in supporting families and facilitating parent choice.

BLISS

As a preemie parent and as a children’s occupational therapist I have my own personal views.

Firstly; misleading headlines cause confusion and upset (although they do of course sell newspapers!). That  “premature children should be treated as ‘special needs’ pupils by teachers” is not a recommendation and does not feature in the original research which can be read here. It is nothing more than a headline.

Secondly; as a parent I know my child, I know our family and I’d like to think I’d know what is best for my son born at 30 weeks…. but, I second guess myself, wonder about the ‘what if’s’, and crave the reassurance that I am doing the right thing. For these reasons I am so thankful for the work of organisations such as Bliss and Summer Born Children for the support and advice they offer to parents of babies born to soon.

PREM

 

And finally, as an Occupational Therapist I understand child development and neonatal care. I know how critical early intervention can be and recognise that every child is unique. I have advocated in my professional life for all children born prior to 32 weeks to be followed up in their infant years, each assessed as individuals and given appropriate support, if required, according to their own individual needs.

But you know what – premature babies are special!

I will leave you with my favourite response to today’s headline… 

“I’d like them to do an article on the resilience and determination of the premature child….Definitely worth reading about that. Mine is feisty, determined and makes me proud every day.”

13,000!

13,000 signatures!

13,000 people; mums, dads, grandparents, uncles, aunts, friends and relatives.

13,000 people; enough to fill a premiership rugby club stadium!

Cc9M7zbWEAAvrIw

PETITION!

“When my first son was born ten weeks early, I had no idea that maternity leave would begin the very next day, months before we would bring him home. Born too soon, the reality of life in neonatal care is very different from what a mother would usually expect from the early days of maternity leave. Lines, monitors, life support machines and recovery from what is often a traumatic birth. Mothers wait days, if not weeks to hold their babies for the first time and face the agonising journey home without their baby each day. The very real cost of premature birth is not only measured in terms of financial pressures placed on families, most recent studies suggest in excess of £2,000 for an average NICU stay, but also upon the long term health implications for the mother, her ability to return to work and her babies development. Extending statutory maternity leave and pay would give mothers the emotional and financial support needed at a time of great stress and trauma – in turn leading to better postnatal health, a more positive return to work and better outcomes for babies development. We call on the Rt Hon Savijd Javid MP and colleagues at the department for Business, Innovation and Skills to recognise the significant and unique needs of families with children born prematurely and to extend statutory leave accordingly.”

Click here to SIGN NOW!

Extending maternity leave for mothers of babies born too soon matters; but don’t just take my word for it. Here are just a few examples of why people have been signing this important petition.

My daughter was also born 10 weeks premature. My maternity pay at full rate ended whilst my daughter was still in the NICU. As the highest waged parent I was forced to return to work sooner than i would have liked; our daughter was still ill, this led to a 8 month bout of postnatal depression for me and bonding issues with my daughter. I would have given anything to have spent more time at home with Martha getting her well, and getting to know her – I spent the first few months not letting myself get overly attached in case we lost her. We barely got her home when I had to return to work – emotionally i wasn’t ready!!

My son was born at 25 weeks and spent nearly 6 months in intensive care. It is important to allow extended leave so as to enable parents to spend more time with their preemie and to ensure that returning to work too soon is not another worry to add to the list of the many, many worries you have with a premature baby.

My daughter was born at 30 weeks and spent her first 6 weeks in hospital. Even when a premature baby is brought home the first few months (at least) are not “normal”. Anxiety- ridden days and nights watching for episodes of apnea and often return visits to hospital are par for the course. It would be amazing if you could at least have the weeks back that the baby was spent in hospital. These babies, given the traumatic start they’ve had, need even more care and time for bonding than term babies; anything that would prolong time for this would be a good thing.

My twins were 11 weeks premature and stayed in Nicu for 9 weeks. I’ve had to take a career break from work as no option to extend maternity leave or reduce my hours.

As a neonatal nurse I see every day the long term health and financial hardships families suffer when a baby is born too early. Extending maternity pay and leave would go some way to relieving the pressures these families face and help improve the quality of life of these fragile babies during their first months.

I also had a premature baby who was born at 33 weeks. I was hospitalised before I had her and have another child at home so my maternity leave has consisted of sitting next to an incubator after major surgery for days on end. Traveling over 2 hours to see my very sick baby suffering physical and emotional pain every day being told shear not make it over and over. Maternity leave should be extended to start when the baby was due or when they leave hospital at least for parents whose babies come too soon! When a baby comes home the emotional trauma and binding issues coupled with the anxiety and medical issues have such a huge impact that parents need time to deal with everything without worrying about going back to work with considerably less time off than other “full term” parents.

This one petition calls for extended leave for mothers of premature babies, focusing on the bond between mother and baby, mums mental health and a mothers ability to return to work. Many mothers are forced to return to work much earlier than they are ready to and others simply have no choice but to leave their career altogether. Whilst this petition specifically focuses upon the needs of the NICU mother, NICU dad’s matter too and we will continue to raise awareness of the realities of NICU and life beyond for all the family.

Next stop 15,000! ….

The Power of Storytelling

Each and every one of us has our own personal story. Our stories of course may be quite different and our experiences unique, but for parents of premature babies our journey into parenthood will overlap and our experiences may be reassuringly similar.

For the last year I have shared my own story of premature birth and of a journey that does not end at the NICU door. I have written about first holds, kangaroo cuddles, grief and loss. I have written about the sudden interruption of pregnancy, the uncertainty of the unit and the sights and sounds of neonatal care that stay with you long after you leave. I write to raise awareness; but I also write because of those who have been before. For the parents who have already shared their own experiences of NICU, whose stories I found when I needed them the most. Yes, each story of neonatal care will be different, but the similarities are often striking and this discovery can bring great relief.

beautiful

Storytelling can be an extraordinarily powerful tool – with stories that offer hope, humour, those that make us think or give us courage. Stories which help us to negotiate challenging times, to give us strength and to shine a light on the way ahead. Stories can bring us comfort and let us know that we are not alone. They can educate and reveal a hidden world. They can raise awareness and offer support.

Have you read a story that has helped given you comfort or hope? Have you got a story to share?

We are always on the lookout for stories of premature birth, neonatal care or life beyond (approximately 550-800 words) and we invite you to share yours.

Email Catriona at smallestthings@yahoo.com

Tommy’s Awards Nomination – a HUGE thank you

I was truly surprised and very honored when my Smallest Things blog was long listed for the Tommy’s Mums Voice Awards at the end of last year.

Although I did not made it onto the shortlist this time, just to be considered was a wonderful recognition for The Smallest Things campaign to raise awareness of premature birth and the needs of parents following a neonatal stay.

I would like to say a huge THANK YOU to everyone who took the time to write to Tommy’s in support of my nomination. I was sent some copies of the correspondence they received in support of my blog. Reading them made me very proud of everything The Smallest Things has achieved in such a short space of time.

“Catriona has worked tirelessly and passionately to bring the issues surrounding premature babies to the public’s attention. She writes from the heart, telling her own story and encouraging others to do the same, to help people understand that having a premature baby or babies is an ordeal that can have a profound effect long after the NICU discharge letter is signed. As a mum to premature twins myself, I’m grateful for the voice Catriona gives to all NICU parents out there, and her campaign to extend maternity leave has achieved incredible support and continues to gain momentum… if anyone can get the law changed, Catriona (and her 11,000+ supporters) can!”

“I feel that smallest things should be shortlisted for the mum’s voice award as it invaluable support for parents of premature babies. I found having a very premature baby to be quite a lonely and isolating experience as although friends and family were very kind they didn’t really understand the grief, guilt and loss that I was experiencing. To hear other people’s stories was very reassuring and raising the profile of the issues around having a premature baby e.g. Maternity leave, will be beneficial to future parents of premature babies.”

“As a grandparent to two beautiful girls who were born too soon I can identify with the message Smallest Things gives. I especially support the call for maternity leave to start when the baby leaves hospital as I witnessed how difficult it was for my daughter to go back to work and leave her two precious girls when they were still so tiny. .”

“I have only fairly recently discovered The Smallest Things. It is so wonderful being able to read the stories of other individuals who have been through the same journey as me….other individuals who write about the pain, the difficulties, sometimes heartbreak but also importantly the joy of having a preemie and experiencing life in NICU.”

smallest thingsThe award which “celebrates a mum who has spoken about her own experience and given hope to others” will be announced at a ceremony in March and I know that any one of the finalists would be very worthy winners for the simply outstanding work they all do.

For me personally it was a privilege to have been considered alongside these amazing women and I not only wish each of the finalists luck but look forward to working closely with many of them in the future in our on-going work to improve the experiences of others.

PM pledges extra support – will it reach prem parents?

The Prime Minister is pledging extra support and will call for a ‘more mature’ conversation about mental health. Specific measures expected in England include – “£290m up to 2020 to give 30,000 more women each year access to specialist mental health care before and after giving birth, including through classes”

This is welcome news for parents of babies born prematurely and families who have spent time in neonatal intensive care. Specialist care is vital for these families with the incidence of post natal depression known to be higher following premature birth and with over 50% of mothers reporting anxiety and displaying signs of post traumatic stress disorder following their NICU stay.

Each year however 80,000 babies are born prematurely and much more needs to be done to support the mental health needs of both mothers and fathers following neonatal care.

Access to specialist mental health care and understanding by primary health care workers will be key to ensure that appropriate and tailored support is given and that timely referrals are made. It is not yet clear however whether the extra funding and support pledged will reach families affected by prematurity and offer the support they need.

For more information on mental health following premature birth please read – PTSD: The hidden cost of NICU

Smallest Things in 2015!

As we begin to set out our plans for 2016, make our New Year resolutions and look forward to what this year will bring, we reflect for a moment on what a year 2015 has been!

2015

Launched in June, our petition to extend statuary maternity leave has reached more than 11,000 signatures and has received national press coverage both in the papers and on the radio!

Our Facebook page has continued to be a hub for all things Smallest Things, with over three and a half thousand supporters reaching a wide audience every day – lets keep reaching thousands more in 2016!

On the blog, ‘Dads Do NICU’ was one of my personal favourites; highlighting the journeys taken by fathers and bringing to the foreground their caring role in NICU. Kangaroo cuddles and skin-to-skin with dads are some of my favourite pictures of 2015 and are worth another look!

Our most read piece, and by quite some way, continues to be ‘PTSD: The hidden cost of NICU’. If raising awareness of the lasting emotional impact of a premature birth is one of our aims, then this article is certainly helping to achieve that. Recent comments on our Facebook page, left by mothers years following premature birth, are a real eye-opener and sum up the vital need to raise awareness and the urgent need for more support for parents of premature babies. You can read their words and add your own here.

ST reception

Taking The Smallest Things to Parliament! In September Croydon North MP Steve Reed visited the Croydon University Hospital neonatal unit and is now championing the needs of premature parents in parliament. Speaking in a Westminster Hall debate for World Prematurity Day, Mr Reed raised The Smallest Things campaign to extend paid parental leave and highlight our 5 reasons why this change is needed. We were delighted when Health Minister Ben Gummer MP stated he would look into this very issue. Mr Reed also hosted a Smallest Things reception in Parliament and it was a great pleasure to meet many of you there. Mothers Ije and Sarah spoke movingly about their own experiences of premature birth and their ability to return to work once they were home. Sarah spoke moving about her twin girls Eva and Charlotte and their story remains a powerful reminder of why this campaign is so important.

The end of 2015 has ended on a high! With great surprise I was humbled to find myself alongside other amazing women long listed for the 2016 Tommy’s Baby Charity Mums Voice of the Year Award. It is a fantastic recognition of what The Smallest Things aims to do; giving parents a voice, an opportunity to share our experiences and to say loudly that the NICU journey does not end at the NICU door.

Saving perhaps the best til last! On the 30th December we had an opportunity to speak to millions of Radio 5 Live listeners as Sarah spoke about her beautiful daughters Eva and Charlotte and I explained the need to give families of babies born too soon more time through extended parental leave.

With your help and support we have made The Smallest Things matter in 2015 – thank you!

Catriona

radio 5 live

Sarah Miles and Catriona Ogilvy Radio 5 Live

 

Fair parking charges for parents of premature babies!

 

 

untitled (4)I’ve taken action!

I’ve written to two hospital chief executives today, one from each of the hospitals where my boys have spent a total of 10 weeks in neonatal care.

My family have spent hundreds of pounds on hospital parking to be with our babies in NICU, other parents have gone through the same and this is backed up by evidence from Bliss and their “It’s not a game” report.

 

I do not believe that parents are visitors to the hospital; after all, visiting hours do not apply to them. They are mum and dad, offering vital care for their new born.

I do not believe that a mother should have to pay to park to feed her fragile baby in hospital or to deliver her expressed breast milk.

I do not believe a dad should have to worry about mounting parking fees, deciding whether he can spend another hour waiting for that precious skin-to-skin time.

Parents of premature babies are integral to their child’s care, and with the already very real and high cost of having a baby in hospital, reducing or scrapping parking fees for parents in NICU could make a real difference.

You can read my letters on the links below. You may even want to copy them to send to your local chief exec – take action today!

parking

Croydon University Hospital – Parking Charges Letter

Kings College Hospital – Parking Charges Letter