Mark and Sarah had their premature baby, Sophie, nearly three years ago. This is their story and why they are supporting the campaign.
Following a final ‘babymoon’, Sarah had a 32 week scan as part of a research project. Having had a normal pregnancy, we turned up for our scan excited to get a ‘good picture’ of what our little one looked like. There was silence as the sonographer scanned our baby and then disappeared from the room. A foray of consultants arrived speaking in hushed voices. There was excess fluid in our baby’s abdomen and no one knew whether it was a sign of a severe infection or a chromosomal abnormality. Tests were performed and we were sent home to wait for the results 48 hours later – but not before termination was suggested to us as a possibility.
The next day Sarah did not feel the baby move and decided to get our baby checked at the hospital’s Maternal Assessment Unit.
Our baby’s heartbeat was irregular so Sarah was admitted immediately to Labour ward while staff tried to delay delivery for 48 hours to allow time for steroids to be given to help our baby’s lungs develop. A few hours later, shortly after Mark arrived, with the baby’s heart rate plummeting, Sarah was rushed for an emergency caesarean and Sophie was born fighting for her life.
Sophie had to be resuscitated in the delivery room and was immediately rushed to intensive care without us having any chance to hold her. At 32 weeks, she weighed 4lbs 8oz – ‘a good size’ we were repeatedly told and ‘it’s lucky she’s a girl as they’re fighters’. That evening we asked one question: “Will our baby live?”. There was a long silence. “We don’t know. She is very sick.”
The next 48 hours were critical as the amazing neonatal team worked to stabilise Sophie and identify what was making her so unwell. After 72 hours, Sophie stabilised and was diagnosed with listeria. Sarah had not been ill but had clearly passed it on to her; which was something she struggled with. Sophie spent a total of six weeks on the neonatal unit, slowly getting stronger and gradually we were able to hold her for short periods rather than just touch her through an incubator.
Mark took his paternity leave at once and was the main person at Sophie’s bedside whilst Sarah recovered from the caesarean. Sarah stayed in hospital for 5 days following which she spent six weeks travelling every day to be by Sophie’s side. It was one of the longest periods of our lives and both of us were emotional wrecks. We both cried daily until she came home. After only two short weeks Mark had to return to work as his paternity leave was finished.
The day Sophie came home was exciting but daunting as we now had sole charge of this little person with none of the monitors and support we had been used to over the last six weeks. Around that time Mark’s work sent him to Ireland for a few weeks. He had no paternity leave left and had used his vacation. There was no option for him to stay at home with Sarah. As a result, Sarah was left on her own looking after a premature baby and felt unprepared, exhausted and alone. When they sent us home Sophie was now a relatively normal new born baby – needed constant feeding and changing. Yet we felt as if we had fallen into a parental leave loophole.
As we raised Sophie we were incredibly conscious of every milestone. No one could tell us if our child would have developmental difficulties. In fact, there were some indications from brain scans that she might – but we would not know for sure until a MRI scan at 12 months. Suddenly, those first months seemed every more important so that we could give Sophie every chance of recovery. Midwives were telling us that breast was best for as long as possible. Every book was telling us to engage in every way with our child to help her develop. The health visitors at the hospital had told us that we needed to give her extra affection to compensate for the weeks in an incubator. All good advice. All impossible to achieve when you are back at work and unable to be with your child for the full maternity leave because you had to start it early but could do little more than peer through the incubator glass. Like so many parents, because Sarah’s maternity leave began at actual birth, not at corrected birth, we were unable to spend as much time with her in that six to twelve month period as other mothers. Even though every medical professional was telling us that our child probably needed support even more than others.
We also noticed great variability in support for parents of premature babies. In the hospital we always found excellent clinical care. But we also found that some staff simply ignored Mark when updating us. The expressing room in the hospital had clearly seen better days and served to depress Sarah’s spirits even further at times – not what was needed when breast milk is so important for premature babies. When we were out of hospital in the community we found an excellent health visitor who came frequently to support us. But we also found health visitors unable to calculate corrected age and insistent as they clearly incorrectly plotted weight versus age. In short, we felt there was a range of improvements needed for premature babies relating to better technical training for community staff, better understanding of the role of fathers and general improvement in empathy for the emotional journey that parents are on.
Thankfully Sophie had a clear brain scan at 12 months. All she has been left with is a squint – not bad for someone who nearly died and it was suggested we terminate.
We are supporting the smallest things campaign as we want to make things easier for other families who find themselves in the same situation in future.
Mark and Sarah are supporting the Smallest Things petition to extend maternity leave for mothers of babies born too soon. If you agree, please support and SIGN our petition too – SIGN NOW!