A GRIEVING mum and dad have set up a foundation after the death of their one-year-old baby.
Christian Rengers and his partner Beth, from Old Hutton near Kendal, lost their daughter Matilda in August 2023 after she was diagnosed with a rare congenital heart defect.
Matilda lived through a complicated and risky operation at the start of her life.
A second operation a year later was thought to be a straightforward one to get her off oxygen but 'ended up being completely different' when doctors discovered she had pulmonary hypertension and other complications in her lungs which meant she would not be able to recover from the procedure.
"Losing a child is something no parent should ever have to go through," Christian said.
Matilda was born a year earlier with unbalanced AVSD with left atrial isomerism.
Her cardiologist Dr Phuoc Duong pushed for a 'bi-vent repair,' which Christian said was meant to repair her heart to as near to normal as possible. This was a new operation, which received some media coverage at the time.
It was meant to give a better life long outcome compared to the traditional single ventricle repair that would have been done on Matilda's heart, Christian said.
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"We lived at Alder Hey whilst waiting for Matilda to grow big enough for surgery. Phu got a surgeon who agreed to take on the risky procedure," Christian said. He added that many surgeons would not agree to it due to the high risks involved. After hours in theatre, Matilda made it through on August 31 2022.
"Recovery was rocky but we finally got to take our baby home at six months of age, just in time for her first Christmas. Over the next few months we were able to create lifelong memories together which we are forever grateful for. At this point we were told her heart was doing well and she had a good life ahead of her," Christian said.
She went back to Alder Hey, the children's hospital in Liverpool, in August 2023 for the second operation to treat extra veins that were bypassing her lungs, which the doctors thought was why she still needed oxygen.
It was this one that Matilda did not survive.
Since her death, the couple have already raised over £10,000 for Alder Hey heart centre. Their goals are to sponsor a room at Alder Hey Ronald McDonald House in Matilda's name, which would allow future families to stay at the hospital free of charge.
They also want to sponsor a camp with Healing Little Hearts charity, which Alder Hey doctors and nurses use their annual leave for to teach and perform lifesaving heart surgery on children with heart conditions.
The couple will complete the national Three Peaks Challenge on 21 and 22 September to raise money for Ronald McDonald House Charities and the Matilda Rengers Foundation.
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