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.”
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