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Motherhood interrupted: What’s it like to be the mother of a premature baby?

Kylie Hodges

premature 300x225 Motherhood interrupted: What’s it like to be the mother of a premature baby?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

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  • MsChin01

    I too had a child at 27 weeks gestation, weighing 2lbs 9oz, by emergency caesarean section. I was given a polaroid photo of my baby on a ventilator in an incubator when I came round from the op. Desperate to see my baby, I headed off to special care, pushing my drip stand in front of me, without waiting for the go ahead from the ward staff. Nothing prepares you for that heartstopping moment when you see your tiny baby there, does it? Finally, if you are fortunate, that wonderful moment comes when you and your child leave the unit for home.

    The dedication and care of the special care unit’s medical & nursing staff cannot be underestimated in saving babies lives and in supporting families through traumatic times. They should have all the resources they need.

  • http://www.facebook.com/mark.rowe.948 Mark Rowe

    Just went through this. We got lucky We had Northside Hospital in Atlanta, they were incredible. He was born at 26 weeks and while there were touch and go moments at the beginning, we were able to go spend 6-8 hours a day with him after the first week of panic and know he was ok the other 16. We have 2 others under 4 so it was nice. Now that he is home and barely 2 months we have gone through some RSV scares, but we have Childrens Hospital satellite offices close and have been extremely perseverant. We are grateful every day for our 3rd boy. He is doing fine.


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