Alice’s family stresses need for organ donation
2019 was the year that the county followed the harrowing story of Alice Spang – the baby girl of Jan and Ballyduff woman Majella – as she fought courageously against dilated cardiomyopathy.
Alice lost her fight on November 14. From shortly after birth, she had battled against her genetic heart defect, receiving treatment in Cork University Hosptial; Our Lady’s Childrens Hospital, Crumlin; and in Frankfurt and Giessen, Germany. Due to her defect, she had an enlarged heart and weak heart muscle. Baby Alice underwent several serious medical procedures, with The Kerryman coverage beginning last summer as she prepared to undergo pulmonary artery banding (PAB) in Germany.
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. Last autumn, she underwent further medical procedure, this time to receive a stoma bag, an operation fraught with danger.
“One cardiologist told us not to do it because she had a high chance of dying under anaesthetic,” Majella said. “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.”
Again, Alice battled through. But as time went by, her health deteriorated, and by winter her family were desperate for her to receive a heart transplant. That call never came, and Alice passed away in the arms of her mother and father in November.
She was laid to rest in Rahela Cemetery after a poignant Funeral Mass in St Peter and St Paul Church in Ballyduff, during which her parents’ love for her shone as brightly as ever.
Over a month on from her daughter’s death, Majella urged The Kerryman readers to keep the importance of organ donation in mind.
“This year up until Alice died, only half the amount of paediatric heart transplant had been done,” she said. “It’s not that less babies or children had died. Their families chose not to donate.
“Her condition is so rare and the worst type of cardiomyopathy because it was genetic. Nothing caused it, her heart grew extremely weak as it was forming in my womb because of a mutated gene.
“We so desperately wanted to donate Alice’s organs but she died in a way that made it impossible, as in she wasn’t on life support because her heart was so weak [that] the sedation needed to intubate her would kill her.
“Also Alice had similar episodes where they thought she would die. There was still a tiny bit of hope she may be able to turn it around. So they continued to give her normal medicines, they didn’t give up on her. But, still, I wish we could have given the gift of an organ to another baby.
“I’m begging parents to talk to each other if some tragedy occurs with their children... In the chaos of your child dying, you probably don’t want to even hear someone ask about organ donation. But have that conversation now.”
Majella also said that parents such as herself feel ‘ hidden’: “Right now in this country, cancer research gets double the funding, but half the amount of children and babies die from cancer than from congenital heart disease,” she said. “Why no ads on the TV for a heart charity? Does no one care? Is the government embarrassed or something? We feel hidden.”