Breathing new life into a brave family

The Lenehans are looking to a brighter future after a ‘torturous’ case against the HSE on behalf of their daughter, writes Noel Baker

AISLING LENEHAN’S parents hope to visit Ireland on holiday this summer and are already thinking about what needs to be packed. After everything, the family has endured in recent times, they deserve a break.

Among the suitcases of clothes and shoes will be a new item, a portable oxygen concentrator (POC) — a piece of kit that breathes new life into its user. The cost of the new POC will be covered by part of the €690,000 settlement agreed this week to Aisling’s family after a High Court action against the HSE, described by Aisling’s mother, Patricia, as “torturous”.

Reading her statement following Wednesday’s court decision, it is easy to see why. She had described the pain of knowing something was wrong with Aisling’s feeding when she was a baby. Born with Down Syndrome and heart problems in Dec 2004, Aisling was ultimately found to have been suffering from reflux and aspiration, where food and acid reflux are inhaled straight into the lungs rather than the stomach. All that, plus the pulmonary hypertension she suffered, has resulted in an expected shortened life span.

Her family claimed delays in treatment contributed to Aisling’s health problems and sued the HSE.

Finally, and painfully, the case was settled this week, but only after what Patricia said seemed to have become “a game of high-stakes poker”.

Yesterday afternoon, Patricia landed back in Vienna, where she lives with her husband Michael, and with Aisling and their other children, Megan, Donnacha and Niall.

Michael, a native of Galway, but raised in Dublin, met Patricia, who is from Achill Island, while they were both working in Munich, Germany, in the ’90s. They had settled back in Ireland by the time Aisling was born and never thought they would be back living on the continent.

The dust has started to settle following this week’s events and, speaking from their apartment in the Austrian capital yesterday, Michael, who works in IT, said the family was now starting to look forward.

That has not always been easy. Michael and Patricia sought damages for alleged medical negligence for failing to diagnose and treat Aisling in a timely fashion. The years of uncertainty and worry over their daughter’s health problems eroded their trust in the Irish health system and, ultimately, led to them moving away from Sligo, where they had been living following Aisling’s birth, and to a new life in Austria. The upheaval was considerable and, in the past number of weeks, as the case was heard in the Four Courts, Patricia stayed in Dublin, while Michael took unpaid leave from his job to take care of the children in Vienna.

Apart, that is, from one week when he got a taste of what was going on in court.

“I went over one week to get a feel for what was going on,” he says. “It was fairly tense, I have to say. I felt we were very small fish in a big pond, in a sense it is not meant for small people like us. Everyone else knows what’s going on and you go in and you have to kind of negotiate your way around and make sense of what was happening.”

The legal argument, the jargon and, from the HSE, the denials. “There is so much riding on it and you are hanging on every word,” Michael says. “I felt the impression I got when I was there was that the HSE was rewriting history.”

The history for Michael and Patricia includes their core contention that there were serious delays in Aisling being referred to a paediatric cardiologist, that her pulmonary hypertension was only diagnosed after she collapsed at five months, and that the aspiration was only uncovered nearly two-and-a-half years into her life. Now, she requires oxygen night and day, every day.

The court case heard strenuous argument from the HSE that Michael believes was “totally selective”.

Patricia referred to how the HSE had suggested that she had not raised concerns over Aisling’s feeding problems. A tape recording of a consultation Michael and Patricia had with a consultant at a British hospital supported the couple’s version of events. During the case, offers were made with deadlines attached before, finally, the offer of €690,000 plus costs was made. The HSE denied all claims and the matter was settled without liability.

Michael says the family, and particularly Patricia, were always the ones raising their concerns, from Aisling’s problems feeding to her distended stomach — “like a pot belly” — and the rest.

“Tricia did all the banging on about stuff, that the child is puking up, and she was told ‘that’s normal, that’s typical’. Patricia is an occupational therapist, she has a good sense for medical things.

“I was there for the videofluoroscopy [checking on Aisling’s swallowing]. There was a black and white television screen and as Aisling took drink from her bottle, you could see it splitting, some was going into her stomach and some into her lungs. When I saw that, my heart sank.

“When the test was finished, we felt really let down. That was the moment when we said we have to get out of here.”

At that point, in 2007, they considered Dublin, London and returning to Munich. A job opening in Vienna led to an interview and within six weeks the family had moved. Now, five years on, the children are thriving, but it was a demanding move, particularly for Megan.

“We did not want to live in a city,” Michael says. “Megan said it on the way to school one day on the tram: ‘Daddy, I miss the countryside.’ We were kind of almost forced to move. Munich and Vienna are similar in size, the school system is very good, you do not need private health insurance, because the medical system is so robust, all Aisling’s medication was taken care of straightaway, which is great, because her medication is very expensive.”

Aisling recently took her first steps and, up until now when she is not in her wheelchair, her preferred mode of transport is what Michael calls a “bum shuffle — she can fairly move”.

Unfortunately, their apartment in Vienna is split across two floors and she has difficulty with stairs. While her elder sister Megan is now thriving in a German language school, Michael believes Aisling’s own development is disadvantaged because she is learning concepts such as colours in two languages while she cannot speak herself.

She communicates mostly through a combination of hand signs and words, yet, for all the difficulties, her parents seem full of optimism for her.

“It’s all really speculation, we would never know how she would have been without all these medical complications,” her father says. “When we were given her diagnosis and prognosis it was really depressing. We were told she might have three to five years [to live]. Neither of us are practising Catholics, we were thinking what do we do?”

What they did, having spotted a sign at Michael’s then-workplace, was go on a spiritual retreat run by former Jesuit priests PJ Francis and Tony De Mello. “When we left that, it changed everything for us. It happened this way, there was a cost and damage to Aisling, but we have to live with that.”

The settlement will allow them to implement changes that will improve Aisling’s quality of life, starting with a new car and her new portable oxygen device.

“We have a range of choices,” Michael says. “Get a car — we have a problem because we have to lug around this big oxygen cylinder weighing 80 kilos. So we’ll get something like a mini bus. We have a Renault Espace at the moment and it can only go so far with the wheelchair and oxygen cylinder.”

Not for long. With the new portable oxygen concentrator, the family can consider flying to Ireland for their holidays.

“What I would love to do, if possible, would be to use the kids’ summer holidays and the money to go back to Ireland for July/August, but base ourselves in Austria,” he says.

“It could be pie in the sky, but it seems like a good combination to me.”


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