Family told baby with half a working heart has weeks to live
- Credit: Danielle Booden
A devastated family have been told their baby girl has potentially only weeks left to live, having been born with half a working heart.
Kelly High, 27, of Albion Drive, has set up a crowdfunding page for her terminally ill daughter Sienna to cover funeral costs and to enable the family to enjoy days out together while they can.
The four-month-old baby was diagnosed with hypoplastic left heart syndrome [HLHS] on February 19 having been born at the Norfolk and Norwich University Hospital [NNUH] on January 24.
Miss High said: "We thought the birth all went very smoothly as we were home within six hours of me giving birth.
"After three weeks and four days my partner was woken up at 3am by her grumbling. He picked her up and she was making heavy breathing noises.
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"He woke me up and we realised she was struggling to breathe so we called an ambulance and rushed her to Norwich hospital."
After scans failed to pick up the defect at the NNUH, the family was later told they could either turn off the machines and say goodbye to Sienna as she was so poorly, or try a hybrid cardiac procedure to prolong her life.
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The family took Sienna to the Children's Acute Transport Service at Great Ormond Street Hospital where she was "fighting for her life" for seven weeks.
She is now on medication and requires three-hour feeds to keep her heart functioning.
Miss High said: "We were hit by the bad news two days ago when we asked the doctor 'how long do you think we have got with her?'
"The doctor said weeks, possibly a couple of months so we will see if she can stay with us and be strong enough. It's been a tough couple of days."
Miss High continued: "When it happened, I was sitting in A&E thinking I was in a dream and that someone would soon wake me up.
"The doctors were saying I was handling it so well but I was just not sure what was going on. I was not with it. It's so difficult to comprehend."
The family are waiting for Sienna's medical files and results from a MRI scan, and they are writing to as many hospitals as possible to see if there is a doctor somewhere who can perform the surgery required.
So far, they have been recommended to try a surgery in Germany, while they have also been searching for options in the United States.
Miss High said: "If we just sat there and did not try, it's like we are giving up."
Sienna's elder sister Maddison, eight, has been temporarily taken out of school due to the situation, as Miss High and her partner are looking to arrange as many fun days out as possible over the coming weeks.
"Maddison is very grown up for her age so we have had to be very honest with her," Miss High said.
"We cannot hide anything from her and we have had moments where we break down and think ;pull yourself together, we have got to get through this'.
"It was such a shock and we were not prepared for it."
After setting up a crowdfunder, Miss High has been left feeling "overwhelmed" by the response with the target of £1,000 reached within 12 hours of the page being created.
The family's ideal last goal is to have a weekend break away to let Sienna "experience and see as much as she can".
On the response to the GoFundMe page, Miss High said: "It's going to be a real help for us. It makes us feel a bit better being supported by so many people. There are a lot of nice people out there."
A statement from the NNUH said: "We are very sad to hear of Sienna’s prognosis and our thoughts are with her family at this difficult time. We are liaising directly with Sienna’s family to look into any concerns or questions they have."
The crowdfunding page can be found online by searching www.gofundme.com/f/2eqwus8ci0?member=11720129