“When Albie was just five hours old he was transferred to CHI at Crumlin. We had an antenatal diagnosis for him of hypoplastic right heart syndrome, so we knew his little heart would need to be looked after in Crumlin. I was there about 20 minutes after him. We were really lucky because Albie was a good weight for a cardiac baby – over nine pounds. Straight away that stood to him. He went to the high dependency in the ward, he didn't have to go to Intensive Care Unit (ICU).
We met our clinical nurse specialist in Crumlin when I was 30 weeks pregnant, but prior to that, I'd never been in the building. All of a sudden it was our new world. Albie had his first surgery at six days old and four weeks later he came home. He was fragile and we had to keep an extra layer of cotton wool around him, but we were just so glad to be bringing him home to Westmeath with us.
At six months Albie had his second open heart surgery. The surgery went well, but his recovery was a bit slower this time. At two and a half years old Albie had his third surgery. He’s had three open heart surgeries now. From a cardiac perspective, Albie is now in a great place. We were with Dr Franklin in March, and we don't need to see her again until October. By the time we visit Crumlin again, all going to plan, Albie will have started junior infants, which is just amazing. In those early days, you can never visualize that. You're working off much shorter milestones.
What makes it more unique is Albie has autism. He's tolerated the hospital environment so well. All the staff were so facilitating of little things I needed to do to make it easier for Albie. His needs were always taken into consideration. We dreaded bringing a two and a half-year-old boy who was nonverbal, who has additional sensory needs, who had all these things going on, into a hospital environment and into ICU. At the time, he also had quite a restrictive diet. All his needs, and in turn our needs, were catered for. I had visions of him pulling out drains and everything. None of that happened. I remember the day the last drain was taken out. I remember sitting at the long window there, just around the corner in the Heart Centre down the very end, and looking out at the Dublin skyline and thinking, ‘I cannot believe the last drain is coming out and he hasn't pulled on it.’ It really was amazing.
Albie will be five in August and he’s in a special pre-school for children who have autism at the moment. One of our local primary schools is opening a special class, starting in September and he has a place in it. He's going to be two minutes down the road and it just means if anything was to go wrong, he's close by.
For a child who's nonverbal, Albie can certainly get his message across. He is so full of divilment. He's so fun loving. He literally has a smile that would melt your heart. He loves music. He can't speak but he will hum a song note perfect. It is just crazy. He loves Nathan Carter, he loves Shrek and he loves all the Disney movies. He definitely has an ear for music and he loves to dance. It's just so strange to hear him humming these songs note perfect, with an odd kind of a sound of a word thrown in. He's so happy and so blessed with his big sister, Brodie and his big brother, Dillon. It's a huge part of Albie's life because they’re so kind and patient with him.
We had 100% trust and faith in Crumlin. Albie’s needs were greatly taken into consideration. We really felt very confident handing him over. It's not an easy task to hand over a child. There's always this chance that you're not going to get them back. You need to accept that they need this surgery or treatment to have a better life. We have always entrusted the team with his care.
Albie will need more treatment in the future. I suppose when you have a child with an uncertain future you need to live a normal life until the time comes when you have to live differently. That's how we've always tried to live. When your child faces an uncertain future research is so important because it's only new developments in therapies, treatments and surgeries that will help Albie progress. Some of the advances due to research, even since Albie was born, have been amazing.
Fundraising is essential to help children like Albie. You can throw €2 into a bucket when you're passing a shopping centre and it will make a difference. You don't know the day or the hour you might need CHI, Crumlin. Two and a half years into Albie's journey, my godchild and niece Fiadh, was diagnosed with cancer. She was in hospital at the same time as Albie and it was one of the most surreal times of our lives. Thankfully Fiadh is doing great now too and started school last year, so we, as an extended family, are doubly thankful to Crumlin. By donating and by funding research you are saving children's lives and giving them the best possible chance of moving forward.”
Clodagh, Albie’s mum.