Tag Archives: Bliss

BBC Women’s Hour – Speaking about the NICU Journey

I was delighted to be invited on to BBC Women’s Hour today to speak about my petition to extend maternity leave for mother of premature babies. The petition has reached an incredible 100,000 signatures!

cueneoyw8au_m5r

I was joined by Bliss CEO Caroline Davey and together we spoke about the needs of families following neonatal intensive care with radio presenter Jane Garvey; highlighting the impact of premature birth upon a mother’s mental health, her ability to return to work and a baby’s need for time to develop.

CpE6LNmWcAAurQ6

 

I spoke about my sons, Samuel and Jack, now age 5 years and 3 years, who were both born premature. I spoke about our journey, which like so many others did not end at the NICU door. I described the isolation mothers can face once they leave the neonatal unit, the on-going worries and anxieties, re-admissions to hospital and the financial impact of an early birth. I spoke about the need for more time for mothers and their babies.

You can listen again to our BBC Women’s Hour piece here.

And, … If you like what you hear, why not share with others?

That way we continue to raise awareness, explaining the unique needs of families following premature and life beyond neonatal intensive care.

 

 

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.”

Little Lights: A time to remember

Yesterday we took our two boys, born 3image0 weeks and 34 weeks to fundraise on the Bliss Little Lights Walk. It was beautiful and moving – you can’t really beat a candle lit walk around Tower Bridge for a location!

imageSigning up for the walk our plan was to raise money for a fantastic charity whose volunteers had supported me after we came home from hospital, and to remember our own journey and just how special our two boys are.

Rather than reflecting on our own journey though, I found that my thoughts were instead with the families who’s babies our no longer with us… and then watching our own boys that old familiar feeling of guilt kicks in; the guilt you felt in NICU when you thought you were at your lowest, only to speak with another mother whose baby was facing a much tougher time than yours. The guilt you had when you felt empty and as if you’d lost your baby, when you know that other mothers have lost theirs. And the guilt you felt when grieving for the lost time with your baby, that lost final trimester and the lost time to hold your new born, when you know that unlike some families you will eventually bring your baby home.

A journey through neonatal care is often fraught with conflicting emotions and it seems these emotions aren’t left behind when you leave the unit. Parents of babies born too soon have been sharing with us the three words which best describe their journey through NICU; loss, guilt and lucky are words that come up time and time again and are perhaps three words that best sum up the emotions of Little Lights Walk for me.

Brushing aside the guilt and embracing the emotions, you learn to live with them as an ex-prem mum, I enjoyed watching our two boys both still too young to understand what it is all about and felt so proud of all they have achieved; but as I watched the light reflect on the river I took some quiet time for my thoughts to be with the families whose babies did not come home from hospital and who remain loved in our hearts. We had a candle burning brightly just for them and they will all be remembered on World Prematurity Day.