Our Journey with Hypoplastic Left Heart Syndrome
And why I created a free app to help families like mine
by Jessica Barker, mum of Maisie and Florence, and founder of Friendili.
Having a baby is exciting – particularly when it’s your first. Reading about parenthood, going to antenatal classes and carefully choosing all the things for the nursery are all part of the thrill. But what you often don’t find, is a guidebook on parenthood when your child has health problems.
I know about this first-hand. My daughter, Maisie, was diagnosed with hypoplastic left heart syndrome 24 hours after she was born. I had a fairly standard pregnancy, except for measuring a bit small. So to say Maisie’s diagnosis came as a shock, doesn’t quite do it justice. We’d never heard of hypoplastic left heart syndrome, and struggled to process the hand-scrawled diagram written by the on-call cardiologist.
“This is very serious,” the doctor said. “And if we don’t operate in the next two days, your daughter won’t make it.”
So we handed Maisie over to the surgeons, and she had a nine hour operation on her tiny heart, that was only the size of a small walnut.
Our journey so far
We couldn’t help but Google ‘hypoplastic left heart syndrome.’ We were shocked, scared, angry, confused and completely broken. “Prepare for a rollercoaster”, the doctor said – and boy, was he right.
From the time Maisie was born, we were in hospital nearly six months. During this time, she had cardiac arrests, seizures, swinging oxygen saturations and more. We lived in the hospital powered by coffee, too scared to sleep and too tired to focus on anything apart from Maisie.
We eventually made it home, along with oxygen and an NG tube. I’d liken our experience to the current coronavirus pandemic. We barely went out, were incredibly lonely, and terrified of Maisie catching a bug and ending up back in hospital. We received information and support from some amazing charities – suddenly, we knew we weren’t alone.
But one of the things I struggled with, was not knowing anyone locally to meet up with who had a child with similar needs. Someone who just ‘got it’, who understood why I couldn’t go out in the rain, or needed to write an almighty checklist of medicines before any outing. I tried to find a parenting app for parents of disabled children or those with health needs, but I couldn’t find one. I wondered why, and started thinking about how one day, I might like to plug the gap.
Life went on and we enjoyed having Maisie at home. As others will testify, learning how to be a parent in a hospital environment is no fun. Now, we had the chance to really get to know our daughter, to form a private bond in the comfort of our own environment.
It was when Maisie was around eight months old that she went in for a cardiac catheter to check for pulmonary venous collaterals. Four hours after the procedure, she had a respiratory and cardiac arrest in my husband’s arms. That moment will stick with us for the rest of our lives. That moment replays, like a recurring nightmare.
But we made it home again. We barely slept, tending to Maisie and checking her constantly, just to make sure she was ok. When you parent a child with complex health needs, you live in a state of high alert. Constantly on edge about what might happen next. It’s something you learn to manage as time goes on, but it never really goes away.
Maisie is now five years old. To look at her, you wouldn’t know there was anything wrong. She’s our little hero, our inspiration, our world. As a family, we still feel lonely sometimes, and I’ve spoken to lots of others who feel the same. My friends who have ‘healthy’ children are amazing, and I don’t know what I would do without them. I educate them as much as I can about Maisie’s condition, often sending them things to read rather than recounting everything myself. But there is something to be said for having friends who truly understand how it feels to have a child with complex health needs. Friends who’ve been there, and who you don’t need to explain yourself to.
The launch of Friendili
That’s why I’ve recently launched Friendili, an app that helps connect families who are going through health challenges – to help people find others who live nearby who have gone through similar things. To chat, arrange play dates, find information and support, and find a tribe of people who ‘get it.’ Members can type in their child’s diagnoses and match with others going through a similar thing, and talk across a range of topics and tribes, covering everything from education and family life, to autism, congenital heart disease and more. What’s more, they can access a pool of helpful information from amazing charities and support organisations like Tiny Tickers.
I firmly believe that we are stronger together. When we talk about and share our experiences, it helps us feel less alone and can give us the strength to carry on.
To find out more about Friendili please visit www.friendili.com, or download it from your phone’s app store.