“My son Alex was born prematurely, weighing less than half a bag of sugar. He was 21-days-old before I held him for the first time. From moments after he was born, Alex lay in an incubator, his tiny body covered with a mass of wires and tubes. Tubes have determined my family’s life for over two years. They have caused so much heartache and trauma for my baby boy, but they are also the reason he is with us today.
At my 25-week scan, I received the most devastating news of my life: my baby had stopped growing and would have to be delivered straight away to have any chance of survival. In an instant, my world flipped upside-down. Overnight, my partner Daniel and I became parents, but nothing was as it should be.
Alex was born extremely prematurely and critically-ill. At only a few days old, Alex’s condition got worse and he was rushed by ambulance to CHI at Crumlin for emergency, life-saving bowel surgery. We were petrified. Alex was so tiny and delicate, and I couldn’t stand the thought of his little body laid out on an operating table surrounded by medical equipment and surgical implements. But as soon as I spoke with the lead surgeon, I knew Alex was in the safest hands. She was so warm, so reassuring and just so confident in the ability of her team.
After four terrifying hours we were told that the surgery had been a success. But Alex was still critically-ill. We put all our trust in the PICU and Neonatal teams in CHI at Crumlin as they fought to save our baby’s life and cradled us at the same time. They are amazing.
Then just as we dared to hope…Alex was diagnosed with Retinopathy of Prematurity, an eye disease that, if left untreated, could cause blindness.
We feared he would never see the beautiful world he fought so hard to be part of.
Once again our baby was transported to CHI at Crumlin, this time for surgery that would determine whether he would ever see. The ophthalmology team did everything they could to save Alex’s sight. He was transported to the UK for emergency surgery, but the team in CHI at Crumlin were by our sides every step of the way.
The day we had always dreamed of finally came and we took our baby home. But our happiness was short-lived. Just as I thought our nightmare had come to an end, there was another challenge that Alex and our family would have to overcome. As soon as Alex came home he started to lose weight. He wasn’t able to take as much of his bottle as he needed. It wasn’t long before he was re-admitted to CHI at Crumlin. We always felt safe in the hands of the medical teams there. It was like they were our second family and the hospital our second home.
Alex spent a week in St Peter’s Ward with feeding issues and had a nasogastric tube fitted so that we could feed him directly through that. We took him home again and he thrived for a couple of weeks, gaining weight. But then the tube started to make him sick and, as he got older, he would pull it out several times a day. We had been shown how to re-insert it, but Alex had been intubated and extubated for so many operations that he was petrified of anything coming near his face. It was really traumatic each time we replaced the tube. Any food he got from the tube would come back up and because he was so scared of anything near his face, eventually Alex wouldn’t even bottle-feed.
As a mother your instinct is to feed your baby. You want to nurture them, but he didn’t even want me near him. It was agonising. While other parents were weaning their babies, I couldn’t even give Alex a bottle. He wouldn’t let me touch his face or even kiss him. It felt like our lives were on hold. Alex turned one but he hadn’t hit any of the usual milestones for a baby that age. He was hungry all the time and very unsettled.
In October 2020 we placed all our trust in the gastro-intestinal team in CHI at Crumlin one more time. Our baby had a gastrostomy tube inserted so that we could feed him directly through a port in his stomach. Alex calls it his little button and it’s like it’s always been part of him, he even plays with it and swirls it around in the bath. The operation opened up a new world for us. It was life-changing, really the best thing that has ever happened to us.
I am so happy to tell you that in December 2020 Alex ate food for the very first time. Now his favourite foods are lasagne, chocolate buttons and meat. Even today when I see him eating, I burst with pride and gratefulness for the team in CHI at Crumlin. Alex has an incredible zest for life.
He’s two-years-old now and a ball of energy. From the moment he wakes up in the morning until his bath in the evening, he’s on his feet. He loves his dog, Fudge, and throwing balls, the playground, scooters and anything outside.
Alex’s journey is far from over. He still visits the eye department in Crumlin every two months and the dieticians, gastro and speech and language teams. He gets the majority of his calories from the gastrostomy tube but the volume he is eating and drinking by mouth is really growing and we hope that one day tubes will no longer be a part of Alex’s life.
Right now, in CHI at Crumlin, there are tiny babies, just like Alex, on the toughest of journeys. They need your support so that the incredible care teams continue to have access to the world-class equipment and research that their little patients need to have the very best chance.
You make all the difference
Your support has funded paediatric research into improved treatment and technology to help save the lives of critically-ill and premature babies like Alex.
I just want to say thank you from the bottom of my heart. Your support is life-changing for people like us. It really is life-changing. Your kindness makes the world of difference to families like ours.”
- Ann-Marie, mammy to Alex.
With your support we will continue to do #WhateverItTakes for children like Alex. Will you give a special gift today to help give critically-ill babies like Alex thrive?