Having a premature baby can be a terrifying time, but a new app from Tommy’s that is launched today (November 17, to coincide with World Prematurity Day) promises to make parents’ journey a little bit easier.
Giving birth prematurely is often unexpected, meaning parents are suddenly thrown in to the unfamiliar world of a hospital’s Neonatal Unit, bewildered and frightened while your precious baby fights for their life.
My son, Hugo, was born in February this year at just 24 weeks because I had severe preeclampsia and severe HELLP syndrome. Understanding what was going on with Hugo was a constant struggle due to my own recovery and exhaustion, and to complicate matters we had been sent to a specialist hospital two hours’ drive away from our home, meaning we felt quite isolated.
The exhaustion and sense of disempowerment and bewilderment makes getting to grips with the complex medical terminology and difficult decisions that sometimes have to be made even more challenging.
My smartphone was glued to my hand throughout my time with Hugo in the unit. My phone was used to take photos and videos of my son, as well as to keep in touch with family and friends via text or social media.
I was delighted when Tommy’s, the charity that funds research into stillbirth, premature birth and miscarriage, asked me to test their new My Premature Baby App. During the last few months, parents of premature babies have been asked to ‘road test’ it to make sure it will meet parents’ needs.
A major feature of the app is a guide to having a premature baby. It includes a wealth of information such as the equipment that helps keep babies alive, as well as common infections and complications that afflict premature babies. Advice on how parents can get involved with cares; feeding, and cuddles is very useful. It also includes information on causes of premature birth (where there is an identifiable cause) – I imagine this will be helpful for mothers like me whose premature birth comes as a surprise, because you will be able to read about the condition when you have a bit more time to take it all in.
When Hugo was born we were given a stack of beautifully-presented books and leaflets about prematurity that sadly were left unread because they were too much to take in. The app’s guide is easily searchable, and would have been a huge benefit to us.
The app also includes the following features:
- A diary, allowing parents to record their baby’s progress and significant milestones, as well as their own thoughts and feelings. We used Facebook to record Hugo’s progress, and my partner had an Excel spreadsheet to keep up-to-date with Hugo’s activities. I’d have loved to have been able to have kept all Hugo’s progress in one place. I would have found the ability to have a private place to record my own thought and feelings – things I would not necessarily have wanted to share publicly on Facebook – particularly valuable.
- The ability to plot weight and height on development charts customised for premature babies. The ability to track these milestones visually will be very exciting for parents.
- The ability to record times, amounts and types of feeding and set alarms for breast feeding or expressing. Time takes on a relative quality in a neonatal unit – I would often find it difficult to keep track of when I was supposed to have been expressing, so I would have found an alarm very helpful. Expressing your breast milk can often be challenging for mothers, so being able to record amounts – which usually do increase as time goes on – would have been a helpful source of encouragement for me.
- The sharing function enables the baby’s pictures and progress to be shared easily with loved ones or shared more widely via Facebook. This would be handy, as it would save doing the updates twice.
- I would have loved the finding friends feature. While we had excellent support from our friends and family, the value of talking to other parents who have been through the same journey – who ‘get it’ – cannot be understated.
Sadly, while Hugo fought so hard, he succumbed to chronic lung disease. He died in my arms aged 35 days. His daddy and I are absolutely heartbroken at the loss of our much-loved, much-wanted baby.
Just as when Hugo was born, when he died we were given a stack of information about bereavement that was too much and left unread. I was heartened to see the app has a dedicated section ‘If your premature baby dies’ which includes sensitive guidance about how parents are likely to feel; the formal processes; remembering your baby; and useful support phone numbers and websites.
With around 60,000 babies being born prematurely (before 37 weeks’ gestation) every year in the UK (one in every 13 births, and the number is increasing) – the app will undoubtedly be an invaluable source of help, support and guidance for scores of parents of premature babies. Thank you, Tommy’s!