Heart mum Danielle shares her experience of daughter Matilda’s heart condition – from diagnosis at 20 weeks to the time they spent at Leeds General Infirmary and once home.
She’s now taking on a 100km Ultra Challenge to give something back to CHSF after the support her family received along the way.
“When I was around 20 weeks pregnant, I had an amniocentesis due to a suspected chromosome normality. It was during that scan that the consultants noticed a problem with Matilda’s heart.
“I was sent straight for a scan with the cardiology team and they initially diagnosed Hypoplastic left heart syndrome (HLHS). They said that Matilda would need several operations and may not live beyond five years old – which obviously broke us.
“But as her parents we had to keep fighting for her. I had scans every week – sometimes several times a week – and towards the end of my pregnancy, a scan revealed that it her heart issue wasn’t HLHS afterall and was Coarctation of the aorta (CoA) and Bicuspid Aortic Valve (BAV).
“I had a planned induction at Leeds General Infirmary (LGI) and we stayed there for around one month. Matilda had open heart surgery at five days old and had a keyhole surgery at five months old. She now has scans around every nine months and is doing amazingly well!
“During one of the most difficult and emotional times in our lives, CHSF were there in so many ways. Whilst in hospital we felt totally helpless, but Children’s Heart Surgery Fund were there to offer emotional support, and also financial support too. We lived in Eckersley House whilst there which we are extremely grateful for (CHSF make a donation towards this accommodation each year). CHSF provided us with a grant so that during the hardest time of our lives, at least the financial strain was reduced.
“They helped to provide food vouchers while staying in hospital, small but meaningful gifts like Katie Bear (their mascot teddy), certificates and medals for heart warriors, and crucial emotional and psychological support for families going through similar experiences.
“The Charity still support me now. I am in regular contact with the team and I am so grateful that I am able to turn to CHSF for support. Their social media page has also enabled me to reach out to other heart warrior mums which has helped so much. Thank you so much for all you have done for me and my family!
“On Saturday 4th July to raise funds for CHSF, I am taking on the Peak District 100km Ultra Challenge. I want to give as much back as I can and raise as much awareness as possible. In many ways, I keep thinking… ‘if I can get through those moments and the pain of seeing her go through that, then I can get through this challenge too.’ This run is my way of turning that experience into something positive.
“I’ve wanted for a long time to give something back but never felt able to do anything meaningful enough. I may not be able to change what we went through, but I can take on something that pushes me to my limits to help support other families who will go through the same thing.”
Danielle is taking on the Peak District 100km Ultra Challenge to raise money for CHSF and to support other families going through similar experiences. If you’d like to support her, you can donate at www.justgiving.com/page/danielle-nugent-5
Matilda turned 2 on 24 May, because of you!
We want to shout the biggest “Happy Birthday” to Matilda from all of us at Children’s Heart Surgery Fund.
We hope you have the best day!
A donation today helps us continue providing practical, family‑focused support to babies like Matilda and their loved ones throughout treatment and recovery.
Please help us continue to support more families who need us.
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