• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Skip to footer
Donate now
  • About Tiny Tickers
  • Media Centre
  • Contact Us
Tiny Tickers

Tiny Tickers

Donate now
  • Support & Info
        • Support & Info

          Wherever you are on your journey, we’re here to offer the support and information you need.

          Find out more
        • What is Congenital Heart Disease?
        • Family Support
        • Are you pregnant?
        • Are you pregnant?
        • Just had a baby?
        • Has your baby got a heart defect?
        • Think HEART
        • Bereavement
        • Useful Resources
  • Professionals
        • Professionals

          We are here to help healthcare professionals improve the detection and treatment of congenital heart defects.

          Find out more
        • Sonographer Cardiac Training
          Our trainer, Niki, with sonographers from Russell Hall Hospital
        • Training services
        • Tiny Tickers' Yorkshire Sonographer Training Project to detect heart conditions
        • Training Resources
        • Cardiac Resources
        • The first Tiny Tickers funded pulse oximetry machine, at Good Hope Hospital
        • Pulse Oximetry Resources
        • Think HEART & Think 20
        • Resources Order Form
  • Get Involved
        • Get Involved

          Whatever your skills and interests, there is a way for you to make a difference to babies with heart problems.

          Find out more
        • Donate
        • Donate
        • Give a gift in your will
        • Our Appeals
        • Challenge events
        • Corporate Support
        • Fundraise
        • Share Your story
        • Play our lottery
  • Blogs and News
  • Your Stories
  • About Tiny Tickers
        • Our Work
        • Our Plans & Ambitions
        • How We Are Funded
        • Meet Team Tiny Tickers
        • Join Our Team
        • Our Values
        • Tiny Tickers’ Annual Reports
  • Media Centre
        • Brand Guidelines
        • CHD Statistics and Research
        • Family Stories
  • Contact Us
You are here: Home / Blog / Our Journey with Hypoplastic Left Heart Syndrome

Our Journey with Hypoplastic Left Heart Syndrome

21st September 2020 in Blog

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.

Another hurdle

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.

Right now

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.

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)

Related

Primary Sidebar

Blogs

  • The Hebridean Way is “mostly flat”
  • The journey of a heart parent
  • Sandie and Sonny are running for tiny hearts
  • Top Ten Fundraising Ideas For Kids
  • How our pulse oximetry project is saving lives
See all Blogs

Your Stories

  • Harrison’s Story
  • SVT and Aortic Stenosis: Arthur’s Story
  • VSD (Ventricular Septal Defect): George’s Story
  • Patent Ductus Arteriosus (PDA) and Aortic Stenosis: Emilia’s Story
  • Our heart defects: A father and son’s story
See all Your Stories

News

  • The Congenital Heart Disease Priority Setting Partnership: a national strategy to address priorities for children and adults with CHD
  • Tiny Tickers places its 500th pulse oximetry machine
  • Make Some Noise for tiny hearts
  • Amazon Smile Update 2023
  • INEOS staff cycle miles for tiny hearts
See all News

More about...

3vt (1) 20 week scan (1) Adult CHD Stories (6) ASD (13) AVSD (8) cardiac (1) Coarctation of the Aorta (36) collapsed aortic valve (1) congenital heart defects (3) congenital heart disease (3) Congenitally Corrected Transposition (4) Critical Aortic Stenosis (4) Double Outlet Right Ventricle (5) Ebstein's Anomoly (2) hypoplastic aortic arch (3) hypoplastic left heart syndrome (8) hypoplastic right heart syndrome (2) Loss (23) Mitral Valve Regurgitation (1) nominate (1) Parents Blog (15) Patent Ductus Arteriosis (3) PDA (2) pulmonary atresia (6) pulmonary stenosis (2) Pulmonary Valve Stenosis (2) research (1) shone's complex (1) sonographers (2) sonographer training (2) support (1) Supraventricular Tachycardia (3) SVT (1) TAPVC (1) Test for Tommy (5) Tetralogy of Fallot (22) tiny hearts (1) Total Anomalous Pulmonary Venous Connection (TAPVC) (1) transposition of the great arteries (44) tricuspid atresia (2) Truncus Arteriosus (4) Vlogs (2) VSD (40) win (1) yorkshire (1)

Footer

  • Facebook
  • Twitter
  • Instagram

Make a donation

Help us provide a better start for tiny hearts. Make a single or regular donations to help babies with heart defects have a fighting chance.

Donate now

Subscribe to our newsletter

You can change your email preferences at any time. Read how we keep your data safe in our Privacy Policy. 

  • Accessibility
  • Privacy policy
  • Terms and conditions
  • Fundraising Complaints Policy

© 2023 Tiny Tickers • Registered Charity No: 1078114

 

Loading Comments...
 

You must be logged in to post a comment.