This is Mabel’s story, shared by her family after discovering complications with her heart during pregnancy.
Children’s Heart Surgery Fund supports the Leeds Congenital Heart Unit, helping provide the care and equipment needed throughout her treatment.
written by mum Leah
“At our 20-week scan, I attended alone as I worked in the clinic and Brad was at work. I had encouraged him not to take time off, never imagining I would receive life-changing news by myself.
“It was at this appointment that we were told something was wrong with Mabel’s heart, and we were referred to Leeds for a fetal echocardiogram.
“We then had to wait all weekend for that appointment, not knowing what we were facing – feeling helpless, terrified and completely heartbroken.
“The echo showed a hypoplastic aortic arch (coarctation of the aorta), a large VSD and a smaller left side of the heart, although it was still adequate.
“We were offered termination but chose to continue and clung to hope as we had regular echos, praying her left side would grow and not develop into Hypoplastic Left Heart Syndrome (HLHS).
“Every scan filled us with fear, never knowing what news we would be given.
“At 28 weeks, we had a scare with suspected fetal hydrops and truly believed we might lose her. An amniocentesis was carried out but thankfully came back clear. An MRI at 34 weeks confirmed her hypoplastic arch was very narrow, her VSD extremely large, and her left side still small but continuing to grow. We had to plan her delivery at LGI so the cardiac team could be ready for her arrival.
“Our little fighter entered the world ready for her battle and had open heart surgery at just five days old to repair her hypoplastic arch and have a PA band placed until her next surgery to close her VSD. The surgery went well, but due to pulmonary artery pressure her chest had to be left open for a few days before being closed.
“Mabel is now recovering, but she still has a long and challenging path ahead. She will always need lifelong cardiac follow-up and may face further surgeries in the future, but she is strong, brave, and defying the odds every day – our precious 1 in 100.”
By supporting CHSF, you ensure we can keep being there for children like Mabel and her family.
We can’t do it without your support.
100km for Matilda
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...
Support for families: April 2026
"Thank u for remembering me. I can imagine u meet lots of families"-- heart mum, during a 'touching base' callDuring the month of March... 63 families worked with overall 25 families received a tailored packaged of Family Support 38 families engaged with -- 16 young...
A calmer space in Leeds Outpatients, because of you
For children and young people living with congenital heart disease - and for their parents and carers - outpatient appointments can bring anxiety, sensory overload and lots of waiting in an unfamiliar environment. Thanks to funding from Morrisons Foundation, and...