Category Archives: Summer Born School

My Tiny Warrior, Off to School

My little one Harry is starting school this September. He was born at 29 weeks, weighing in at an impressive 4lb 4oz (some of the weight was due to him carrying extra fluid because of a kidney disorder). He spent over two months in NICU. 


I look at Harry today and I never cease to be amazed at the remarkable little boy who stands before me. I think back to the beginning of his journey, and how we weren’t sure he would even survive. The most vivid memories are of times spent next to the incubator, putting my hand through the plastic porthole and placing my finger gently in the palm of Harry’s hand. Those tiny fingers would grip my finger firmly. It felt almost as if Harry were trying to convey to me that he was hanging on, he was fighting and I shouldn’t worry so much. The tiny fingers which were almost translucent, little nails barely formed, the skin red because his body hadn’t matured enough to cope with life outside of the womb. I remember when he would open his eyes and look around. These big, beautiful eyes which seemed so knowing. Harry looked (to me) like a wise little owl.  


When I took Harry for his last day at nursery in the summer, I held that little hand in mine. The hand that used to be so very tiny, so fragile, now gripped my hand squeezed it before he ran off after his little sister, laughing as they splashed through puddles. My tiny warrior. It struck me then how far he had come.

And now to school. I am worried about that first day, how am I supposed to keep it together? I will have to try and shut off my reality that I have watched my boy fight for his life. I have watched him get very sick over the past four and a half years, and I have watched him get well again. A constant cycle of normality and terrible fear. I have held Harry in NICU as his face turned grey and he stopped breathing. I have held Harry as he has battled infections and sepsis over the past few years. I most recently held him as he battled through low potassium levels, fever and dehydration (he has Bartter Syndrome, a rare genetic kidney disorder). To watch him go to school, there will be a huge amount of pride, but also the fear of wondering how he will cope. Given the battles he has already overcome, school should be no problem (says my rational side).


So, I will try my best as he goes to class. I will let go of that not so little hand. I will smile and wave and tell him to have a good day, and that I will see him at home time. And as I walk away, I may allow myself to feel the enormity of it and give in to tears. My tiny warrior, off to school!

Ellie Hepburn 

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Star Achiever Award!

I wrote recently about a preemie kind of proud.

Today I am simply proud!

My nearly five year old is receiving a Star Achievers Award at school this afternoon for working really hard with his learning.

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Just three weeks ago he spent 6 nights in hospital with respiratory difficulties.

Two days after coming home, he was back at school.

“He’s pretty tough”, I said to his teachers who were worried that he was going back too soon.

I am so proud of my little boy who doesn’t give up.

I am proud of my little boy – the youngest in his year; the one who should have started school this coming September, but instead was born into an academic year too soon.

I am so thankful to his teachers who give him extra support; who recognise the needs of a child born into the wrong academic year and who encourage him to be him – a four year old.

Like any parent I am proud of my Star Achiever.

My Star Achiever who keeps going; who takes everything in his stride…

My Super Star Samuel, who has been making me proud since day one.

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.”

Top 10 of 2015!

top tenA huge thank you to everyone who has written, contributed, shared and read; each and everyone helping us to raise awareness in 2015!

So, here goes…. Our Top Ten most read posts of the last 12 months!

At 10. Our Story “In those first few days I was lost and empty; the emotional impact of leaving hospital without a baby in your arms is hard to describe…..” 

9. Starting School a year too soon “He continues to meet all his milestones, keeps up with his peers and fills me with pride – yet he will still start school a whole academic year too soon. He’s ready and he’s not ready.”

8. 30ml Mum  “Everything revolved around expressing. Was I doing something wrong? Why couldn’t I produce more? Other mums would enter the expressing room and fill bottle after bottle – I couldn’t even get half way.”

7. Too soon, Too early: This Family needs more time  “I felt conflicted and confused. I was grateful that she was well enough to come home, but I couldn’t help feeling cheated out of time and then felt guilty for feeling that way.”

6. Extend Maternity Leave for mothers of premature babies “…more than a quarter of my maternity leave was spent visiting my baby in hospital and according to Bliss, like me, 60 per cent of mothers felt their maternity leave was too short.”

5. Eva & Charlotte’s Story “While NCT groups up and down the country are meeting for coffee and talking about pooing and breastfeeding, NICU mums gather in expressing rooms to discuss breathing support, surgery and methods of tube-feeding. It’s like an alternative reality where life-or-death moments are discussed in the same way as nap routines.”

4. Shock, Trauma & Hope: A life changing journey through neonatal care “…This is the mark of a premmie mum. From nowhere, I was signed up and given lifelong membership to a club I never wanted to join, nor even imagined existed.”

3. Top Ten! | What not to say “At least you got to miss that really big stage”.

2. Longer mat leave for preemie mums: 5 Reasons Why “Mothers of babies born too soon face the agonising journey of leaving hospital without their baby day after day. Any NICU mum will tell you, there is a lot of watching and waiting in neonatal care – waiting for that first precious hold, usually days, sometimes weeks after their baby is born.”

smallest things

and finally, our most read post of 2015….

  1. Time to Talk: PTSD the hidden cost of NICU “Nothing can prepare you for parenthood, but you allow yourself to imagine the arrival of your baby; those first precious holds, taking them home to meet loved ones, the time together to grow and bond – and then suddenly everything you imagined is dramatically replaced with the alien and uncertain world of neonatal intensive care.”

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guest blogIf you’d like to write for The Smallest Things or share your story in 2016, then get in touch! Just email Catriona or send in your story (approx. 650 words) to smallestthings@yahoo.com

 

Notice! It’s not quite the end of 2015, and our Top Ten is subject to change as we near the New Year…Check back on midday 31st December 2015 for our final count down!

Starting School: A year too soon

This week, like many parents, we will discover which primary school our son will attend when begins his school life in September.

I face this news with mixed emotions. He’s ready to start school, I’m ready for him to start school (or at least I will be!), and yet he shouldn’t be starting school.

Due in October, but born in August, my son will be starting school a whole academic year earlier than had he been born full term.

He loves to learn, has endless questions and has thrived with his development at nursery. He is confident, bright and happy. He continues to meet all his milestones, keeps up with his peers and fills me with pride – yet he will still start school a whole academic year too soon.

He’s ready and he’s not ready.photo

Like many children born prematurely we have ongoing medical needs with hospital admissions and frequent doctor’s appointments. A simple cold or cough cold can knock him for six, but he is a trooper and soldiers on. Smaller than his peers I often worry, but I know how tough he can be – I have seen how tough he can be.

I face September and the start of school with mixed emotions.

Pride, huge pride at my little boy who takes everything in his stride; who has overcome so much and who is ready to take the next step.

Trepidation that he might not be ready, that everywhere I look I see headlines telling me summer born children struggle, that my first instinct was to delay his start.

And sadness, sad in my heart that I know his prematurity has lost him a year; a year in which to play, a year in which to grow, a year in which to prepare and a lost year with his mum and younger brother.

I fully support the call from charities such as Bliss and the Summer Born Campaign to allow greater flexibility in the schools admissions process; and strongly believe that parents must be able to delay or defer school entry without fear that their child will miss out on reception year. But what if, like me, your child is ready? Ready, but still too soon. Ready, but still missing out on a year. As a mum I usually shout loud about parents knowing best – but here is a case where I would have liked the decision taken out of my hands. For my child, born too soon, to begin school automatically acording to his due date. There would have been no difficult decisions, no ‘what if’s’ and no anxious wondering whether we were doing the right thing. We were never meant to start school life this September, but the fate of prematurity sees my little boy arriving early once again!

Information about delaying or deferring a school place can be found on this excellent guide from Bliss – http://www.bliss.org.uk/deferring-delaying-and-flexible-school-attendance

The Smallest Things is campaigning for extended maternity for mothers of babies born too soon, many of whom spend their first months of maternity leave visiting their tiny baby in hospital. If you agree, please sign and share our petition – SIGN NOW!