A year ago, Sarah and Fearghail Connolly from Ballyglass, Claremorris, were just like thousands of other couples around the country, excitably preparing to become first-time parents.
The dream to extend their family had been two years in the making and on April 2, 2013, baby Ella was welcomed into the world.
Of course the arrival of a new baby is busy and challenging and, like any other parents, they were getting to know their young tot and all her quirks and nuances, dealing with minor illnesses and worries, sleepless nights and the excitement and hurdles that come with navigating the waters of early parenthood.
But nothing could have prepared the Connollys for what they faced just two months later, when a seemingly beneign bout of unwellness turned out to be an extremely rare brain formation disorder called Lissencephaly.
Also known as ‘smooth brain syndrome’, the condition means the folds on the brain do not develop causing serious developmental problems.
Children born with smooth brain syndrome are severely neurologically impaired. Their life expectancy is significantly reduced and they are likely to never have muscle control, vision or speech.
For the Connollys the diagnosis was a bolt out of the blue.
“One day, Ella was feeding and she started to choke on it,” explained mum Sarah. “I took her to the doctor and they diagnosed her with reflux, which is quite common.
“We changed her food and as far as we were concerned, everything was fine.”
A few days later, Ella began crying hysterically.
“Everything just went completely off the radar,” remembers Sarah. “We thought she aspirated (breathed in ) some of her feed and this made her sick. There was a question mark over whether she’d had some kind of seizure but nobody could tell exactly what was wrong.
“There were a lot of different scans that night (at Mayo General Hospital ). Then there was a cat scan in the morning and something showed on that,” explained Sarah. “They performed an MRI and Ella was sent straight to Temple Street Hospital in an incubator in an ambulance. We were told the next day.”
The diagnosis of smooth brain syndrome is devastating. There are only a handful of other recorded children with Lissencephaly in Ireland.
“For Ella, it means she won’t walk, talk or sit up and there’s a question mark over her vision. Ella is not like another baby. She won’t develop. She will always be a baby,” explains Sarah. “Every child is different. There’s not actually a lot known about this or its causes so the neurology surgeons can’t tell you what your child is or isn’t going to do because they don’t know either.”
The days immediately after the diagnosis were some of the hardest.
“It was a massive shock,” remembers Sarah. “My heart ached so bad. I thought I’d die. As far as we were concerned we had a healthy baby and everything was fine.
“We went through a week of hell because you go through a grieving process for the child you thought you had. And then the shock wears off and you have to take in all of this information about what’s going to happen with Ella and what it would all mean for us.”
Most people would consider anger and a sense of injustice to be a natural reaction.
“Of course,” says Sarah. “But it’s not really anger in a way, it’s just that you would sometimes ask, why us? It’s our first child and it was something we wanted so badly. We were so delighted with our little bundle. There were a lot of mixed emotions. It took a while to accept it.
“And then it’s a case of accepting it and being strong enough to cope with it. And even though you get this news and you thought you had another child, if anything, you love her more and you tell yourself to throttle on because I have to be there for Ella.”
Sarah says husband Fearghail has been a rock. “I think he was possibly better than me because he seemed stronger in accepting this and moving on from there.”
Sometimes, Sarah inevitably finds herself asking what life could have been like for Ella if circumstances had been different.
“A lot of friends and relatives had babies at the same time as me so sometimes it can be hard to watch their development and know that that’s not going to happen for Ella. Sometimes that hits me but then I think ‘cop on Sarah. Ella is happy and that’s all the matters’.”
Learning to care for a baby with Ella’s complex needs has also been a steep learning curve. The Connolly’s home can sometimes resemble a mini-hospital ward with high-tech equipment to monitor Ella’s stats, feeding tubes and breathing apparatus. “I just took it all onboard straight away,” says Sarah.
“It’s been a big change in our house. I was always planning on going back to work - I was a full-time hairdresser - but that’s not an option now. I don’t care as long as Ella is all right but it is just another part of this new life of ours.”
Ella will continue to need full-time, life-long care and it is also likely their home will need adjustments to accomodate her needs.
To this end, Sarah and Fearghail’s friends have tried to lend their support in any way they can.
A group of friends and family have come together to organise a fundraising event called A Night For Ella on April 20.
All funds raised on the night will go to support the Connollys in caring for Ella.
The event is taking place in the Fáilte Suite, in the Welcome Inn Hotel, Castlebar. It will include a fundraising auction, entertainment with Concorde, a raffle and a disco until late.
The fundraiser organisers have set up a Facebook page called A Night for Ella where people can leave messages, make a donation or sponsor a prize for the auction.
Tickets are on sale from Mulroy’s filling stations on the Breaffy Road and at Moneen.
To buy tickets or support the A Night for Ella fundraiser, contact Ray McTigue on (087 ) 2277053, David Larkin on (087 ) 2211943 or Kathryn on (087 ) 2277616.
Follow the fundraiser on Facebook at A Night for Ella.