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World Prematurity Day – Tommy’s guest post

November 16, 2012

Guest post via Tommy’s Charity,  who are Amoralia‘s charity of choice, for #WorldPrematurityDay

With thanks to Kylie Hodges (@kykaree) who is a keen supporter of Tommy’s and mother of Joseph who was born at 27 weeks.

“You sit in the waiting room of your antenatal clinic like every other expectant mother. You look around the room, at women at various stages of pregnancy. It unites us all, we all have this in common: being pregnant, expecting a baby.

But without knowing it you are different. You are one in 13. You won’t deliver a full term baby, you will deliver prematurely. Maybe like me, you will develop pre-eclampsia. You might go into pre-term labour, your placenta might fail, you might have a medical condition that necessitates early delivery of the baby, there are many reasons and sometimes there are no reasons for pre-term birth.

Suddenly your world won’t be Moses baskets and the latest prams. You won’t be thumbing through the Mothercare catalogues or browsing the nursery stores. No, the journey you will take will be very different.

Your baby lies in a plastic box. Perhaps they are having help with their breathing, being fed through tubes. Perhaps they have some additional complications, your tiny baby might need surgical interventions. You are having impossibly complex conversations with consultants and nurses, having to make decisions that will have far-reaching consequences. Suddenly your baby’s life lies in the hands of strangers – experienced, well-trained experts but strangers all the same. You are no longer the best person to take care of your baby’s complex and changing needs. And that hurts.

Motherhood interrupted. You are no longer taking care of your baby in the womb. You are restricted to six hourly nappy changes. The rest of the time sitting, waiting, hoping and maybe praying. Every day you will go out of the ward for lunch, to use the toilet, to phone anxious relatives and you will see mothers and fathers walking down the corridor with their full-term babies in car seats, going home. If your baby has been born as early as mine was at 27 weeks, you will have days and days of it being rubbed in your face. You are different. Your baby is different. Your journey is not the same.

However, as your journey progresses, things start to change. You find an inner strength you didn’t know you had. You start to understand the machines, the equipment, and the medicine regimes. You start to get to know your baby in a way few others will have the opportunity to. You see your baby grow in ways that seem so improbable. When Joseph was born his ears were still fused to his head, he had no nipples. I got to see stages of development and growth usually hidden away.

Over time, you learn how to deal with doctors, nurses and other professionals. You learn how the system works. You know what developmental stages to look out for, the next steps to progression from the intensive care unit, to high dependency, to nursery and eventually the holy grail- the rooming in room for a couple of nights to learn how to take care of your baby’s needs. Alone. You get used to the fact that your milestones are different. That you are waiting for your baby to learn to breathe, feed and eventually manage the two simultaneously, more difficult than you might imagine.

My baby was born at 27 weeks gestation three years ago. Our experience I think, in some ways does define the way I parent now. I hold on quite tightly but work to let him go, to let him shine. We are one of the exceedingly lucky families. My son defied all expectations, despite being only 1lb 7oz at birth, he has now caught up with his peers and is thriving at preschool.

Having Joseph at 27 weeks completely changed my outlook on life. I was taught a very hard lesson in not ever taking things for granted. I learned that I am, as the cliché goes, stronger than I ever could have imagined; braver than I ever thought possible. Joseph taught me that in the tiniest little human, there is an unbreakable will to survive. He taught me trust.

I strongly believe that prematurity needs to be looked at in closer detail by the NHS and health professionals. I believe too often we say “well it’s one of those things”. It appears to me that there is an acceptance that one in 13 babies will be born prematurely. Prematurity is costly, it comes at a huge personal cost to families and babies and a financial cost. I strongly believe we need much better care of high risk pregnancies, from identifying which pregnancies are at high risk, and providing appropriate support.

I also strongly believe that the heroic measures taken by our neonatal teams need to be backed up by investment in the people that make up those teams, and the equipment that it requires. I also believe that we need a much more cohesive system to provide support to those children who are born prematurely and will need long term, often lifelong care and equipment provision.”

Tomorrow is World Prematurity Day and it is a time when we can focus on prematurity, celebrate our tiny babies, and truly concentrate our efforts on prevention and care.

To read Kylie Hodges’ blog click here

Kylie has contributed to a guide on premature birth entitled ‘Having a Premature Baby’ which has been produced by the baby charity Tommy’s. The guide aims to support families expecting a premature baby or who have recently had a baby arrive early. The guide is funded by the Asda Foundation and can be ordered for free from www.tommys.org/store

Tommy’s funds medical research and provides information on the causes and prevention of miscarriage, premature birth and stillbirth.

For more information visit www.tommys.org/worldprematurityday

This article first appeared on the Independent Blog earlier today.

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