Our HLHS Journey and why I created an app for families like ours

Having a child is an exciting journey – and when you have your first, it’s like a great big step into the unknown. When I was pregnant with Maisie, like many others, my husband and I did all the things you do when you’re expecting a new arrival. We went to antenatal classes, read all the books on starting a family, and excitedly tried to work out from the scans whether we’d be having a boy or girl.

A Shock Diagnosis

Never in a million years did we expect to be told 24 hours after birth that Maisie only has half a heart. There was nothing in the guidebooks about this. No-one to tell us what was coming. No-one to hold our hand and tell us it will be ok. We’d never heard of hypoplastic left heart syndrome, and in a haze of tears, struggled to understand the quick diagram the doctor had drawn us.

We couldn’t help but Google things. We were shocked, scared, angry and confused. “Prepare for a rollercoaster”, the anaesthesiologist said. I don’t think I truly understood how much of a rollercoaster it would be.

From Maisie’s birth, 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, in that we barely went out, were incredibly lonely, and terrified of Maisie catching a bug and ending up back in hospital.

It was when Maisie was eight months old that she went in for a routine cardiac catheter. She had a respiratory and cardiac arrest in Adam’s arms – a moment we will never forget. But Maisie defied the odds again and made it home, where she belonged.

Now

Maisie is now five and going into year one in September. She had her Fontan this time last year, and although she had complications like plastic bronchitis, she’s doing well and looking forward to going back to school.

Right from the moment we found out about Maisie’s diagnosis, and throughout every step of the journey, Little Hearts Matter and the ‘LHM family’ have been at our side. From helpful information and booklets, to just listening and offering support, we don’t know what we would have done without them.

With Little Hearts Matter we found hope, inspiration, and most of all, one big family of single ventricle families right behind us. People who had been there. People who were going through it, too.

The coronavirus pandemic has been difficult for everyone. There’s been conflicting and confusing advice, some of us shielding – others not. Trying to navigate work, home-schooling, challenging behaviour and more. It’s no wonder that families like ours are feeling burnt out and under pressure.

The thought of going back to school is terrifying. As I write this, Birmingham is on the verge of another lockdown. Cases of coronavirus are rising fast, and I, like many other parents, don’t understand how the situation now is any less dangerous than it was two to three months ago.

Knowing you’re not alone

Although the recent events have been a challenging and sometimes isolating experience, the togetherness of the Little Hearts Matter community has been amazing. It’s like we’re one big family all working together.

Knowing you’re not alone in an experience is vital, and it is this that has inspired a recent venture of mine. Throughout our journey with Maisie I realised there weren’t loads of parenting apps or magazines that dealt with a ‘different’ version of parenthood. I wondered why, given the fact that there are over 2 million children with longterm health conditions in the UK, and over 800,000 children registered as disabled[1].

So I decided to plug that gap, and have just launched a social networking app for parents who have children with disabilities and health conditions, Friendili. It matches you with others who share similar diagnoses, and has a range of topics and groups you can be a part of too. Although it’s only been live about a month, it’s really encouraging to hear that people are already finding it helpful. There’s a long way to go with it, but please check it out and let me know what you’d like to see more of.

I’ll be sharing LHM’s information on the app too, so if you come across anyone who might benefit from LHM’s support, please do spread the word!

Jessica is mum to Maisie who has hypoplastic left heart syndrome, and the founder of Friendili.

[1] https://www.dlf.org.uk/content/key-facts

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    A huge thank you to Taylor for highlighting our leg pain in CHD study, here's the link for anyone who missed it 👇www.lhm.org.uk/wp-content/uploads/2019/08/CTY18-009PRF.pdfTaylor is a medical student with a single ventricle heart condition, you can follow her amazing journey by clicking the link below 👇Fontan with a Future - A Medical Student's CHD Journey#halfaheartnothalfalife#tuesdaymotivationRaise your hand if you’re a Fontan patient and experience leg pain!All my life I have had occasional aches in my legs, especially after a day of strenuous activity. I thought it was just “growing pains” but I continued to experience this after I stopped growing.Interestingly, a recent study found that this phenomenon is common in Fontan patients. In fact, 94% of patients with Fontan circulation reported leg pain compared to 30% of their healthy siblings. While this study only looked at 220 patients, I think the findings are striking. The authors don’t know exactly what causes this pain but proposed some ideas like decreased oxygenation levels, lower vitamin D or decreased bone density.Fortunately, this pain can be easily treated with over-the-counter pain medicine, heat, or massage. While it is uncomfortable, there is no reason to believe it is harmful or dangerous. Still, it would be interesting to get to the bottom of this and help those who suffer from pain frequently.Would love to hear from others if you have had similar experiences!If you’re interested to read more you can check out the article: www.lhm.org.uk/wp-content/uploads/2019/08/CTY18-009PRF.pdfLeg Pains in CHD: a distressing symptom of a wider problem, Hutchinson et al.#heartwarrior #medicalstudent #wellness #research ... See MoreSee Less

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    "We will never forget hearing the words "he might not survive.""But Loki showed us he was a true fighter.""Sometimes I feel people forget how serious his condition is, because "he is doing well" yes and showing everyone he is battling on, with the biggest smile, the cheekiness and his little ways but yet just one little thing could mean he could end up back in hospital".Shared by LHM member Emma, heart-mum to Loki here who was born with HLHS. Thank you. ... See MoreSee Less

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