TWO days after her son was born, Deirdre O’Gorman asked the question that no parent even wants to think about:
“Does this mean that Finn will die?” she asked her newborn’s paediatrician in March 2016.
Deirdre, a beautician, and her husband Tristan, a software architect, had just been informed that little Finn had a rare neurological condition that they’d never heard of.
Lissencephaly, which is also known as “smooth brain condition” results in a situation where the folds of the brain, used to transmit signals are missing, or “smoothed out”, causing serious developmental complications for a baby.
The only warning that something might have been amiss during Deirdre’s pregnancy was a scan at 20 weeks showing that Finn was very small.
“Doctors couldn’t pinpoint anything wrong other than that he was not growing as normal,” Tristan recalls.
An amniocentesis showed nothing wrong, while an MRI scan at 30 weeks was inconclusive.
“Our obstetrician was still confident and felt there was a 95% chance of everything being fine. There was only a very small chance of something being wrong. We were reasonably confident, although there was a concern that he might be premature,” says Tristan, recalling that Finn was born at 37 weeks via an elective caesarean section.
Weighing just 4lb 30z, Finn was placed in an incubator.
“He was small but perfect and did all the things a baby should do. At this stage we were relieved that things seemed to be OK,” Tristan recalls.
However, two days after Finn was born — and following another MRI scan — the young couple’s paediatrician told them that Finn had a rare neurological condition, one they’d never heard of.
“My wife asked ‘Does this mean Finn will die?’,” recalls Tristan now.
“It wasn’t even on my horizon; I was surprised to hear Deirdre ask that.”
They were referred to the neurology team and learned that Finn’s life expectancy was just two years — but that some children with the condition had lived longer than that. They were also told what to expect:
“Finn would have profound developmental delays. He would never walk or talk, that he might not smile or be sociable and that after a few months there would be epilepsy and a failure to thrive. He would need 24/7 care,” says Tristan.
Deirdre gave up her job as a beautician and the couple took Finn home to their house in the seaside village of Whitegate.
For a while everything was fine, but at age three months Finn was rushed to hospital with a suspected seizure. More and more seizures began to occur.
“We spent most of the next three months in and out of hospital because he kept having seizures,” says Tristan who recalls that at one point the baby was having 70 or 80 seizures a day.
Medication failed to bring the epilepsy under control, while little Finn was also unable to keep feeds down.
It’s been a very stressful time.
Observes Tristan: “You’re fire-fighting constantly. I often say to Deirdre that when we wake up it is like a boxer preparing to go into the ring — you don’t know what the day will hold, but there is always something that has to be faced head-on,” he ponders.
However, while things can be rough it’s certainly not all doom and gloom, as he points out.
“Finn is a lovely little boy. He is our favourite person!”
Eventually doctors came up with a new medication which started to take effect and Finn became seizure-free for several months. However, during this period his feeding continued to be an issue and he eventually had to have a peg fitted to his tummy.
However, he was still experiencing significant digestive problems — Finn was throwing up continually. At 14 months he had an operation to improve his ability to digest.
“It helped but he still gets chronic retching,” explains Tristan.
Now aged two, Finn can go for days or weeks without a seizure — but when it happens, he can still have up to seven seizures a day.
He still needs round the clock care.
“The epilepsy is more manageable but it flares up now and again,” explains Tristan, adding that Finn is continually peg-fed for 13 hours a day and also gets multiple rounds of medication — a total of 13 different medications daily.
ON TOP of all of this, secretions of mucus and saliva pool in his chest so he has to be suctioned several times a day or have a nebuliser to help him breathe. His muscle tone has become weak and he is beginning to develop scoliosis and hip dysplasia.
The couple have support both from the Jack and Jill Foundation which provides them several hours home support, while the only dedicated children’s hospice in the State, LauraLynn offers the family 15 days respite annually.
LauraLynn’s annual fundraising appeal runs all this week to Friday, June 8
“LauraLynn’s medical staff understand Finn’s condition very well and they look after all his needs during the stay,” says Tristan, who says that although the couple still tend to stay with Finn, the respite gives them some time to themselves, allowing allows them to enjoy normal things — a visit with relatives, a meal out with friends or a day’s shopping.
“We know when he’s at LauraLynn we can switch off a little bit because Finn is in such good hands,” Tristan says, adding that the hospice staff have also given the couple invaluable information and advice about equipment that helps them provide better care for Finn.
“I don’t know where we’d be without LauraLynn and the Jack and Jill Foundation,” he says.
He and Deirdre take things day by day:
We don’t know what lies ahead — we cannot predict what will happen. We don’t know how long Finn will be with us — he could be gone tomorrow, so we just want to make his life as happy as possible and make every single day count.