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Sunday 17 November 2019

Little Alice has just ‘weeks’ left if she fails to get a heart

Tadhg Evans

Nine-month-old Mallow girl Alice Spang does not have much time left to live unless she receives a heart transplant, her parents have told The Corkman.

The Corkman has followed Alice’s story since she travelled to Germany during the summer to undergo pulmonary artery banding (PAB). The little girl has dilated cardiomyopathy – meaning she has an enlarged heart and weak heart muscle – the symptoms of which first appeared shortly after she was born on January 4. She is currently being treated in Our Lady’s Children’s Hospital, Crumlin. She has undergone a number of very serious procedures, and while she has shown tremendous fight, her parents were this week given heartbreaking news.

"We asked if we were looking at Alice dying in months or weeks," her mum, Majella, said this week. "In his experience, we're looking at weeks."

"If Alice were 10kg she could have a VAD (vascular assist device); in her case the only type that would work is something called the Berlin Heart device. But even then the outcomes are bad; 70 per cent suffer neurological problems from blood clots, and Alice would need to be on a blood thinner, and that's very hard to do with a baby. The right dose is hard to find.  "When her heart stops supplying enough blood to her organs, she'll be taken off the transplant list ...We desperately need a heart before that happens," she added. Since first falling ill, Alice has been treated at Cork University Hospital; Crumlin; and in Frankfurt and Giessen in Germany. Alice underwent several procedures in Germany during the summer, including PAB, which it was hoped would either delay or avert her need for a heart transplant.  In the days after undergoing PAB on June 14, she became very sick, and the right side of her heart - which had been considered her good side - collapsed. 

She was transferred to Giessen for mitral-valve repair/replacement surgery, and she also had the bands from her June 14 surgery removed. Another band was put back on the outside of her pulmonary artery. And it has continued to be a testing road for Alice and her parents since then.  Last month, she was given a stoma bag, and the little girl showed all her trademark fighting spirit to make it through that procedure.

"The stoma surgery was a big thing," Majella said.  "One cardiologist told us not to do it because she had a high chance of dying under anaesthetic. So he was suggesting palliative care at that time, keeping her comfortable and letting her go. She had a 90-per-cent chance of dying under anaesthetic, and there was also a high chance of not coming off the ventilator after.  "But in true Alice form, she was trying to fight her way back to us, and at 10pm that night they took out the tube and she was breathing away on her own." Majella and her husband, Jan, this week had to face up to the news delivered by medics, but Alice has again shown her fighting qualities. While the family told  "It's hard to put into words," Jan said of what his family is going through. "After all we've been through, to think it might all have been in vain.

"We're just hoping for that call [for a transplant]...What's starting to happen is that we're slowly reaching the stage where her body can't cope with the heart that she has.  "She had been bumped up to the top of the candidate pool, roughly, for a transplant...She's been on the list since the end of August, so we're about two months in and, unless you're lucky, the average waiting time is 12 to 14 months. She doesn't have that. "She is one of the smallest if not the smallest on the list. If a small heart turns up, she would more than likely be the only candidate it could go to...So we could get lucky, but a heart like that doesn't show up very often. "Cases like Alice's highlight the need for increased organ donation. If people are in the terrible situation that they lose a family member and are asked  if they wish to donate organs - the answer should immediately be yes," he added. The couple again thanked everyone who has supported them. A GoFundMe page for Alice's medical needs remains live under the title 'Alice's broken heart'.

Corkman

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