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

Tadhg Evans

Ballyduff woman Majella Spang has told The Kerryman that her nine-month-old daughter, Alice, does not have much time left to live unless she receives a heart transplant.

The Kerryman 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, and she is currently in intensive care 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," 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," Majella 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 Jan this week had to face up to the news delivered by medics, but Alice has again shown her fighting qualities.

While Majella told The Kerryman that they initially feared Alice may only have hours to live, Alice has been much brighter in the days since.

"She's actually doing well here in ICU; she's the most active and happy patient they have," Majella said. "We were told that she will be leaving ICU today [Tuesday]. But her prognosis is still the same.

"I'm making next Saturday Christmas Day, and most of my family are coming up, and a few close friends, too."

The couple has again thanked everyone who has supported them to date. A GoFundMe page fundraising for Alice's medical needs remains live under the title 'Alice's broken heart'.