'We didn't have a car seat with us because we didn't think we'd be taking a baby home' - Brave parents on life with Conall (3)
Conall Shiels's parents have their work cut out coping with his special needs, alongside the needs of their other children. Here they tell Joy Orpen why staying at the LauraLynn Children's Hospice in Dublin gives them all a great break
A black people carrier pulls into the parking lot of the LauraLynn Children's Hospice in Dublin.
Out tumbles Cara Shiels (8) and her brother Senan (6), clearly excited, in spite of the long trip from Co Donegal, to be back in their "home away from home". Soon their parents, Aoife and Kieran, are also busy, strapping Conall, who is nearly three years old, into his heavy-duty wheelchair. A conventional buggy would be useless, as Conall's neck isn't strong enough to support his head. He has a few other challenges as well; including epilepsy, being non-verbal and visually impaired.
The seeds of this situation first became apparent when school teacher Aoife went to her local hospital in Letterkenny for a routine 20-week scan in 2014. "We were excited, hoping to learn the sex of the baby I was expecting," she explains. "But a bombshell fell instead, when we were told that his head was enlarged, and that this was likely to result in brain damage." The Shiels were referred to the National Maternity Hospital, Holles Street, Dublin, where doctors confirmed the original diagnosis; the baby was suffering from hydrocephalus.
Hydrocephalus causes a build-up of fluid in the brain, which can lead to brain damage. It can be caused by birth defects, such as spina bifida, or it may be the result of an infection. Regardless of the cause, the news was devastating. Aoife was unable to return to the classroom, as she couldn't face the inevitable questions about the child she was expecting.
As the weeks progressed, scans showed that the unborn child's head was getting bigger and bigger, putting him and his mother increasingly at risk. Would the pregnancy even go to full term? And if it did, would the baby be strong enough to survive the delivery? No one knew for sure. "It was absolutely terrible," says Aoife. "Our very worst nightmare had come about. It sucked all the goodness out of that pregnancy."
But finally, at 36 weeks, Conall was delivered by caesarean section at Holles Street. "We had a nun present, ready to baptise him, if needs be," says Aoife. "We didn't even have a car seat with us, because we didn't think we'd be taking a baby home." But not only did feisty Conall survive the birth, he actually achieved nine out of a possible 10 on the Apgar score, which measures a newborn baby's physical condition. But just seven hours later, he took a turn for the worse, and he was baptised.
After that, the Shiels had numerous meetings with specialists about their very sick child. When Aoife was well enough, she was allowed to take Conall back to Co Donegal, even though the prognosis for the infant was gloomy. "We were told to enjoy him for as long as we had him," she remembers, with tears in her eyes. Aoife says it's been a roller-coaster ride since his birth, with frequent visits to Temple Street Children's University Hospital in Dublin. Conall has had eight or nine surgeries, including several to insert shunts (small tubes) into his brain to drain excess cerebrospinal fluid. "The last one was just before Christmas 2014," explains Aoife. "And that has worked well ever since."
Nonetheless, Conall has been in and out of hospital many times this past winter, because of infections and various other complications. Otherwise, he requires 24-hour care and is fed through a PEG (percutaneous endoscopic gastrostomy) tube. This delivers liquid nourishment directly into his stomach, for two hours, every two hours, around the clock. The Shiels get invaluable help from the Jack & Jill Foundation, and from HSE and local hospice nurses.
From the very beginning, Aoife and Kieran (who is also a teacher) have known that Conall's time on this earth might well be very short. So, every second spent with him is priceless, but it also makes their pain even harder to bear. Nonetheless, they do everything they possibly can to love, protect and nurture Conall. However, on top of all this, they still have their careers to think of, a mortgage to pay and two other much-loved children to consider. So, it is indeed a punishing lifestyle.
What brings light into their lives are the 15 days and nights a year that Conall spends at LauraLynn. It is the only children's hospice in Ireland, and was founded by Jane and Brendan McKenna, following the deaths of their own children, Laura (4) and Lynn (13), within two years of each other.
What the McKennas have created is a magical world within a safe medical cocoon, where children and their carers find a remarkable level of love, support and understanding. "We've come four times so far," says Aoife. "Conall stays downstairs where he is looked after by highly trained medical staff, who know everything there is to know about him. They take care of him at night as well, and give him all his feeds and medication. So we don't have to constantly watch the clock, and we can get a full night's sleep. For once, we are free to come and go. Usually, we stay upstairs in one of the family rooms, which have en suite bathrooms, and access to a communal kitchen. The kids love it too, because they are spoiled by the staff and have an Xbox in the room."
Aoife says this respite care means she and Kieran are, for once, able to devote themselves to Cara and Senan. "We take them on the Luas, and feed the ducks in St Stephen's Green," she explains. "Simple things that other families take for granted." Meanwhile, Aoife knows Conall is being cosseted in the course of a programme designed specifically for him. He loves the sensory baths taken in a big hot tub with his favourite music playing, while gentle light changes colour.
With over 140 staff employed at LauraLynn, love permeates this wonderful, immaculate facility; it is enhanced by the joyous, child-centred paintings and murals, vibrant colours, and bright sunlight streaming through the big windows.
As to Conall's relationship with his siblings, big sister Cara says, "he gives me lots of kisses". Senan agrees wholeheartedly. "He hugs me and gets into my bed for a cuddle during story time at night." Meanwhile, Kieran cradles Conall in his arms while talking gently to him. The little boy responds with the biggest smiles and the most heart-warming chuckles imaginable.
Children's Hospice Week, from May 22, focuses on the "heroic" efforts of families caring for seriously ill children.'Be a Hero' by texting SUPERHERO to 50300 and donate €4. For more information, see lauralynn.ie
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