Tuesday 21 August 2018

'A nurse picked Oisin up and calmly left the maternity ward with him in her arms' - father on son's blood disorder diagnosis

When John Stack's son Oisin was diagnosed with haemophilia, John knew very little about this blood disorder. But, he tells Joy Orpen, he's hopeful a cure will be found for this complex condition, which another of his sons, Fionn, also has

John Stack with his son Fionn (5). Photo: Mark Condren
John Stack with his son Fionn (5). Photo: Mark Condren

John Stack and his wife Ellie Heffernan know what it means to be vigilant. Given that two of their four boys have difficult-to-spot health challenges, they need to watch over them constantly.

This was not a journey that John, an engineer with Dublin City Council, or Ellie, a student teacher, had ever anticipated. Their first boy, Cian, was born nine years ago with no particular health issues. So, when Oisin, their second son, made his appearance at the Rotunda Hospital two years later, they naturally assumed things would be equally uneventful. And, initially, they were.

However, the day after Oisin's birth, Ellie noticed the baby's temperature had dropped and he had a cough. "They weren't too worried at first," says John. "But soon after, a nurse picked Oisin up, and not wishing to frighten us, she calmly left the maternity ward with him in her arms. She then encountered a paediatrician, who became so alarmed by the baby's appearance, he literally ran with him to intensive care."

Oisin was just 17 hours old. John and Ellie were left stranded in a state of utter shock. They weren't allowed into ICU, so they couldn't even comfort their sick child. Meanwhile, they feared for his life, without knowing what was wrong.

"Some hours later, a doctor told us that Oisin had severe internal bleeding. He told us it was unlikely he would survive the night, but they were doing everything they could," says John with tears in his eyes. The news got even worse. The infant had already lost 50pc of his blood volume and they'd found a 'mass' on his liver.

"Then we thought he had cancer," says John. "We fell apart completely. I couldn't even talk. I sent a text to my mother in Kerry and told her Oisin was probably going to die. We then requested he be baptised. That was the first time I'd seen him since he was born. He was in an incubator, with all these tubes. It looked like a glass coffin. He was having seizures. You could see his little body in spasm, but we weren't even allowed to touch him."

Meanwhile, John's parents flew from Kerry to join Ellie's Dublin-based parents, at the hospital. "They'd come to say their goodbyes to Oisin," explains John.

The most worrying problem was the baby's loss of blood, so he was given transfusions. Within 12 hours, he began to stabilise. Having survived his second night, this brave little fighter was transferred to the ICU at Our Lady's Children's Hospital, Crumlin.

"It was still touch and go," says John. Thankfully, over the next few days, the bleeding was brought under control, so transfusions were no longer required.

However, it then transpired that the baby's clotting factor was dropping. At the time, there were plans to do a biopsy of the growth on his liver, but this latest revelation put paid to that. "Thankfully, they found out in time," says John, "because the surgery could have caused a massive bleed." It later transpired that the "mass" was in fact just a haematoma - a collection, or a sac, of blood. As the days passed, Oisin improved. "It was a great joy for us when he was moved from ICU to the high-dependency ward," John recalls. "And a week later, he was moved to a general ward."

About two weeks after his birth, Oisin was diagnosed with haemophilia. "My first emotion was pure relief that we had a diagnosis," says John. "All I knew about haemophilia was that it was a bleeding problem."

Having identified that Oisin lacked a particular clotting factor, the challenge was to replace that. A central line was inserted into his chest to allow medication to be delivered easily, and blood samples to be taken. Oisin spent seven weeks in hospital, with Ellie by his side. Meanwhile, his parents were being trained to care for him at home. Once he was discharged, they began injecting him three times a week. Unfortunately, Oisin's body began rejecting the clotting factor, so he needed additional immune therapy treatment. For the next 18 months, he had injections every day, while other complications arose, including infections in the Port-A-Cath in his chest. He would then have to have a new port inserted. Ellie and John's lives had now become a constant round of hospital visits, appointments, surgeries, administering medications and juggling work with home life.

Currently, Oisin is doing really well. He's happy at school and only needs injections twice a week, which are delivered directly into his veins. John believes his son will be able to inject himself in the not-too distant future. In the meantime, he has acquired two younger brothers - Fionn (five) and Naoise (two). Unfortunately, Fionn also has haemophilia. "Some hours after his birth, he too began to deteriorate," explains John. "It was the same thing all over again. But at least we knew what we were dealing with." It has emerged that Ellie and her mother are carriers of a defective gene that affects the clotting of blood. However, it can also occur spontaneously (in about one-third of cases).

Fionn has to be very closely monitored. "He's on daily meds and we can't afford to miss even a day, or he'll have a bleed," explains John. "It wouldn't be visible. It would be internal, and seeping into an organ, muscle or joint. Every time you have a bleed into a joint, it gets damaged. You don't need an impact for a bleed. You can go to bed and wake up with one. So we try to prevent, rather than risking any damage."

John, who is a fitness expert in his spare time, says Fionn would love to play football. So he will do what he can to facilitate this. "Our objective is that the boys live as full and normal a life as possible," John says. He says it hasn't been easy, caring for their four wonderful, very individualistic boys. "I felt I had to be brave for Ellie, but there were times I'd be up half the night crying," he admits. "I don't think I have ever dealt with the emotional aspects of this, and I probably should, one day."

Nonetheless, he is immensely grateful for recent medical developments.

"Currently, Fionn is on a clinical trial and that's working well, while a new, subcutaneous therapy will mean injections only once a week," John says. "However, in the long term, I reckon gene therapy will finally deliver a cure."

What great news that would be for the Stack- Heffernan family and for everyone else affected by haemophilia.

The Irish Haemophilia Society is celebrating its 50th anniversary this year. For more information, see haemophilia.ie

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