'I asked if my child was going to die' - Mother's harrowing journey to bring daughter back to health

Soon after Jessica Hall was born, she became desperately ill. Her mother Elaine tells Joy Orpen the only thing that could save her daughter's life was a heart transplant. What followed was a harrowing journey back to health

Elaine Hall with her daughter Jessica. Photo: Gerry Mooney

Around this time four years ago, Elaine Hall asked one of the hardest questions any parent will ever have to pose: "Is my child going to die?"

It took an extreme act of bravery to confront the grim reality that had just been dished up to her, when her newborn daughter, Jessica, was diagnosed with two serious heart conditions. Suddenly, the wonderful family Christmas Elaine and her husband Stephen had anticipated, following the birth of their second child, was consigned to the irrelevant file; there were now much more urgent matters to consider.

This nightmare began at the end of November 2014, when Jessica was born at Cavan General Hospital (CGH) following a normal pregnancy. "A few hours later, she developed a rash," says Elaine who was then 23 years old. "They thought she had a viral infection. They also began to suspect she had a murmur caused by a hole in her heart. But they thought it would close over in time. Nonetheless, they made an appointment for us to see a cardiologist at [Our Lady's Children's Hospital] Crumlin."

Two weeks before Christmas, Jessica was taken to the children's hospital by her mother and grandmother. There she was given echo (echocardiogram) and ECG (electrocardiogram) tests, to check the structure and rhythm of the heart. Later, she was seen by a heart specialist and a clinical specialist nurse. "We were told that Jessica had two very serious heart conditions, called hypertrophic cardiomyopathy and pulmonary stenosis," Elaine explains. "I was absolutely shocked and horrified. I asked if my child was going to die. They said they couldn't give us an answer, at that point."

Elaine says that when they had left home in rural Monaghan early in the morning, they had been so certain all would be well that she and her mother had planned to go Christmas shopping in Blanchardstown after the hospital appointment. Instead, Jessica was admitted to the Children's Heart Centre at Crumlin. "When something like that happens, your world just crashes around you," says Elaine. As time passed, Jessica's condition deteriorated; she wasn't feeding properly, she was lethargic and she slept a lot. Elaine was taught how to do CPR (cardiopulmonary resuscitation) in case her tiny daughter's heart stopped. The infant was also given medication to try to prevent cardiac arrests.

Ten days later, Jessica was discharged from hospital. "We were delighted to have her home for Christmas," says Elaine. "It was just amazing." However, that jubilation was short-lived when, on January 2, Jessica developed mild flu-like symptoms. As they had been warned to take any signs of ill-health very, very seriously, they took her to CGH. "I thought her symptoms were so slight, they would laugh at us," says Elaine. "But from that moment on, everything exploded." Three days later, Jessica, who was now desperately ill, was rushed to Crumlin and put on life support. She didn't return home for almost a year.

Some months later, following genetic testing, she was diagnosed with Noonan syndrome. According to the HSE, this affects one in 1,000 to 5,000 people. Symptoms, which can range from very mild to severe, may include distinctive facial features, short stature, and heart defects. There was no doubt that Jessica's heart was in a bad way. "It was very worrying for us all," Elaine remembers. "Every day, the team had to battle cardiac arrests, and constant infections that nearly killed her. How they kept her alive, I'll never know. In July, her organs shut down altogether, and we were told to bring our families in to say goodbye. That wasn't the first time we were told to do that; but I never did bring them in. I was too stubborn; I wouldn't let Jessica go," she says. During this particular crisis, Elaine didn't see her four-year-old son Daniel for four whole weeks. "Even though he was with his two amazing grannies, who love him very much, he must have felt absolutely shattered," she says.

Eventually, Jessica was put on the list for a heart transplant to be done at Great Ormond Street Hospital, in London. Early one morning some months later, Elaine finally got the call. "I jumped when I saw it was a UK number," she remembers. "When they told me a possible donor heart had been identified, I ran bawling down to ICU to tell them; but they already knew, and were busy getting Jessica ready." And so began a logistical challenge of epic proportions to get Jessica, who was still on a ventilator, into a plane at Baldonnel Aerodrome.

Photographs of the transfer reveal what looks like a mobile operating theatre, sitting on the runway, and about to be taken into the belly of the plane. Somewhere within all that paraphernalia, lay little Jessica, who was massively bloated by her heart condition. She was supported by a full medical team, who by lunchtime, had delivered her safely into the capable hands of staff at Great Ormond Street. However, as the hours crawled by, Elaine and Stephen's nerves became more and more tattered. Eventually, the transplant was given the go-ahead. "We were in total shock," Elaine says. "It was all so surreal."

The operation took nine hours. "We got to see her briefly at 1am, when we witnessed her new heart beating," says Elaine. "It was absolutely unbelievable." Two weeks later, Jessica was flown back to Dublin, still on life support. A week later, she was taken off the ventilator at Crumlin, and has thrived ever since.

In November 2016, the Halls held a big family gathering, to celebrate not only Jessica's christening, but also the generosity of her donor. "Thanks to them, Jessica is now full of life," Elaine says. "She just loves hugs and kisses and is a happy wee girl, in spite of all she's gone through."

Elaine says she will never forget the Herculean efforts made by the staff at Crumlin, especially Dr Orla Franklin, a paediatric cardiologist, and Helene Murchan, a clinical specialist nurse. "Helene and Orla went way beyond what could be expected," Elaine says. "Stephen was also an absolute rock during that year at Crumlin. All our Christmases now are magical."

Elaine has a festive wish: "Now I fully understand the unbelievable importance of organ donation in saving children's lives. I would urge everyone, of whatever age, to become an organ donor."

CMRF Crumlin fundraises for Our Lady's Children's Hospital Crumlin and the National Children's Research Centre. For more information, see cmrf.org

For organ donor cards, contact the Irish Kidney Association which distributes cards for all types of organ donation. Tel: (01) 620-5306, or see ika.ie