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Sixmilebridge family call for access to life-changing therapy for newborns

WHEN Laura Collins and her husband Paul held their new born baby on New Year’s Eve not quite two years ago, it was a celebration the Sixmilebridge family will never forget. The couple had barely been allowed to hold their son since he was born, four days previously. A few hours after he came into the world, little Luan had had to be rushed to a neonatal care centre in Cork. Diagnosed with a form of brain damage known as Hypoxic Ischaemic Encephalopathy (HIE), Luan was in a race against time to secure treatment. His parents faced an agonising wait – first for a specialist ambulance to come from Dublin, then the transfer to Cork. All the while, the clock was ticking down on the crucial six hour window for the start of a breakthrough treatment to bring down Luan’s body temperature and stop progressive damage to his brain cells.

“To us, Luan seemed fine,” Laura said. “His condition was mild to moderate, so it took time for the diagnosis. We were told Luan would need some extra support and things started moving very fast. We had no idea what HIE was or what it meant and by the time the team told us that Luan would need to be transferred to Cork, the ambulance was already on the way from Dublin.”

At around 3.30am, Laura had to say goodbye to Luan as a specialist ambulance team took him from University Maternity Hospital Limerick (UMHL). “I assumed, at first, that I’d be going with him,” Laura said. “That was my instinct. There are two specialist doctors who travel and nobody else is allowed in the ambulance. It was really difficult. We were sending our baby into the unknown and trusting him to others to be looked after. The nurses were great because they arranged for me to say goodbye, but I really did believe when Luan was going that I might not see him again.”

Paul had to drive to Cork behind the ambulance which arrived in Cork at 5am, allowing Luan’s treatment to start within the six hour window. Total Body Hypothermia Cooling or ‘brain cooling’ involved placing the baby on a cooling mat to bring his body temperature down and keep it at 33 to 34 degrees Celsius for 72 hours. After three days, during which Laura and Paul were rarely allowed to touch their son, Luan’s temperature was slowly increased. His parents and the medical team held their breaths to see if the procedure had worked. “At the end of the treatement, an MRI is needed,” Laura explained. “Because it was Christmas, we have to wait a little longer for that, but it came back clear and showed there was no permanent brain damage. We couldn’t have hoped for a better outcome. We got to hold Luan on New Year’s Eve. It felt as if we’d won the lottery.”

Despite the trauma of situation, the Collins family know they are among the lucky ones and that many others don’t have the same outcomes – mainly because they can’t access treatment within six hours. The vital brain cooling therapy is available at just four hospitals in Ireland. The Cork service is the only one outside of the capital.

One of those campaigning for a change to that situation is solicitor Carmel Finnegan. Her work with Dennison’s Solicitors in Abbeyfeale first brought her into contact with the plight of children with HIE. “Around one of every 900 births will result in HIE,” she explained. “It’s not very common, but the situation is arising far too often when the treatment is not easily accessed. I’ve come across HIE in dealing with medical negligence cases and it’s a form of brain damage where there is reduced oxygen or blood flow to the baby before, during or after birth.”

Working with families affected, Carmel found herself diving into the research and reaching the conclusion that better access to brain cooling therapy is urgently needed. “What I found was harrowing in terms of the availability of this treatment,” she said. “It is a postcode lottery, and I don’t use that term lightly. We need to have this treatment made available at more maternity hospitals and we need to do something about the transport system so that children can access it in time. There is a real imbalance in the provision of this service and nobody seems to be thinking of all of the rural babies who are at risk of missing out, with potentially life-changing consequences.”

Awareness of the condition and the potential of the brain cooling treatment is growing as more research is conducted. “The first statistics on the subject show that 140 babies born over the course of 2016 and 2017 needed treatment,” Carmel outlined. “Of those, 40% had to travel to get it.” What is of huge concern to Carmel is the finding that 87% of those children were unable to secure treatment within the six-hour window, greatly reducing their chances of a positive outcome.

Carmel has now started a campaign to push for improved access to brain cooling. Former Health Minister Simon Harris forwarded her correspondence to the Health Service Executive (HSE) who have cited cost as a reason why the service is not more widely available.

“Basically, the HSE have told me that the barrier is budget and the money needed to train staff and provide equipment,” she said. “The reality is that it costs €4,000 per baby and that is very little when you consider the size of the compensation awarded to children who are injured at birth.” With the change of Health Minister, Carmel is hopeful that Stephen Donnelly can be persuaded to extend access to the therapy. “As it stands, it’s harrowing that babies have to be taken away from their mothers who can’t even travel with them in the ambulance. Then, if you have a situation where there is a specialist ambulance stuck on the M50 on a Friday evening, there’s very little hope of getting the baby treated in time. I really want Stephen Donnelly to come on board and it would be amazing to see him acting on this issue.”

In Sixmilebridge, Luan, now 18 months, is fit and well. “He’s meeting all his milestones and he’s doing really well,” said Laura. “He still sees a consultant regularly to check this progress, but he’s thriving, thank God.” The family is very aware that Luan’s outcome could have been different and Laura said she can’t understand why such an important service should be so difficult to access. “You would have to ask what value is being placed on a child’s life,” she said. “What is a treatment that costs €4,000 compared to the cost of lifetime care for a child who suffers serious brain damage. I can’t understand why, in 2020, the treatment isn’t more widely available. We’re talking about our most precious children and a treatment which can save lives and change lives. It’s value has been proven.”

A petition which Carmel has started on Change.org has already gathered 8,000 signatures and the Birth Injuries Facebook page offers more information about HIE and the campaign to extend brain cooling services.

A letter with a set to detailed questions was sent to the HSE by Carmel earlier this year. “That was four or five months ago,” she said. “I’m still waiting for an answer and appreciate the delays caused by Covid-19. I recently read, in the debate about the new national children’s hospital, that doctors were worried about children being transferred from one part of Dublin to another for treatment. Nobody seems to be thinking about rural children, especially the babies who need brain cooling. We have to address this imbalance.”

About Fiona McGarry

Fiona McGarry joined The Clare Champion as a reporter after a four-year stint as producer of Morning Focus on Clare FM. Prior to that she worked for various radio, print and online titles, including Newstalk, Maximum Media and The Tuam Herald. Fiona’s media career began in her native Mayo when she joined Midwest Radio. She is the maker of a number of radio documentaries, funded by the Broadcasting Authority of Ireland (BAI). She has also availed of the Simon Cumbers Media Fund to report on development issues supported by Irish Aid in Haiti. She won a Justice Media Award for a short radio series on the work of Bedford Row Project, which supports prisoners and families in the Mid-West. Fiona also teaches on the Journalism programmes at NUI Galway. If you have a story and would like to get in touch with Fiona you can email her at fmcgarry@clarechampion.ie or telephone 065 6864146.

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