“I was over the moon when my baby girl was born. I imagined we’d be home in six hours, but we were in hospital for 11 weeks.”
When Claire and David, from Glasgow, were pregnant with their first child, doctors noticed their baby wasn’t growing. Born via induction at 37 weeks, Lucy started to go blue just an hour after birth.
Doctors took Lucy – who at birth weighed only 4lbs 3.5oz (less than 2kg) – to the neonatal unit at their local hospital to investigate what had caused her change in colour. The team suspected she had transposition of the great arteries – a congenital heart defect where the heart’s two main arteries are reversed, leaving a shortage of oxygen in the blood.
The family were transferred to the neonatal unit at York Hill, which is now Glasgow Children’s Hospital, for a transposition operation. However, Lucy had to first gain weight, so surgeons waited until she was seven weeks old to operate on her. The operation was seemingly successful, and Lucy’s check-ups throughout the following year were positive.
At Lucy’s one-year post-op check-up, doctors noticed her blood pressure was high and fitted a catheter to test the pressure of her heart. The following morning, Lucy collapsed at home and was rushed back to hospital where, after a two-week investigation, the family were given the diagnosis of pulmonary hypertension – high blood pressure in the lungs that causes strain on the heart.
“My world just crashed.”
“The first thing I wanted to know was: ‘What’s the operation we need to get her fixed?’” says Claire. “That’s when they told us that this illness doesn’t have any cure. There was nothing we could do.
“My world just crashed. It was the worst thing to hear. I said: ‘What do you mean? There must be something?’ There was a question in my head, but I didn’t want it answered: ‘So how long has she got?’ The doctor told me: ‘Maybe a year.’”
Lucy was referred to Great Ormond Street Hospital (GOSH) in London, where she was placed on oral medication. However, she didn’t respond to the medication in the way the doctors wished, so it was decided that she would need surgery to fit a Hickman line permanently into her chest in order to administer her IV medication directly.
Consequently, Lucy’s family has just two weeks at GOSH to learn how to administer her medication at home, including operating the small pump that infuses her treatment via a central line. In turn, they trained Lucy’s grandparents and nursery staff because her medications must run continuously for 24 hours a day, seven days a week. At Lucy’s nursery, the children know not to touch her special unicorn backpack that holds her pump.
Lucy returned to GOSH when she was two years old for further surgery, where she had a blow-off valve implanted to help ease the pressure in her heart. It involved inserting a disc into Lucy’s heart, allowing the chambers to regulate the pressure when it becomes too high.
The crucial decision came when the doctors broke the news that to further improve Lucy’s prognosis, she would need more surgery – this time to either fit a Potts shunt to help her heart’s functionality, or to have a lung transplant.
“The doctors didn’t have a lot to tell me about the outcome of the lung transplant, as so few children have received one, so it was a hard decision to make,” says Claire. “It’s not like there’s a donor organ waiting on a shelf, and there’s no guarantee that Lucy’s body would accept it. It could take 10 years and then she’d be back at square one, followed by more hospitals and different drugs.
“‘Do we take out her lungs that are working okay, or introduce a Potts shunt that has only been administered on three children, which is risky?’ It was a big decision on our shoulders – it’s your kid’s life in your hands. We decided to go with the Potts shunt surgery. Even that operation didn’t fix Lucy, but it did give her a better quality of life.”
The Potts shunt operation took place at GOSH and was a new technique for decompressing the heart’s right ventricle to improve the organ’s efficacy.
Flamingos, Zumba and unicorns
“Lucy is very strong-minded and really brave, as she takes it all in her stride,” says Claire. “Beautiful and bright, she has an amazing imagination – she sits up with her sister and makes up her own bits of the story.”
Now age four, Lucy is doing well – she enjoys dance classes, Zumba and running around with her big sister, Mia, and younger sister, Emily. To celebrate her birthday earlier this year, her family threw a flamingo party, decorating the house with flamingos, pineapples, balloons and bunting.
Claire, Lucy and the rest of the family do a lot of fundraising, including Scotland’s well-known KiltWalk. “I hope that one day there is a cure,” says Claire. “And that it will not only benefit Lucy but other children too.
“Research is hope! If it wasn’t for research, there wouldn’t be hope in finding a cure. Without the funding from charities like Sparks, research wouldn’t be possible.”
For critically ill children like Lucy, there’s no time to lose.
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