“When I was pregnant with my twins the scans showed that Grace was a lot smaller than Juliette. I was kept in hospital in Cork for about five weeks until my girls were born at 34 weeks in 2017. It was tough because we’re from Kerry, so it was a long time to be away from home. I had an older son as well, Leo, and he was only two and a half. There were constant scans and visits with doctors in the run-up to them being born. We didn’t know if there was anything particularly wrong, just that there was a size difference between them. This can be common enough in identical twins so we didn't think too much about it.
When the girls were born everything looked good. We stayed in Cork for another week because the girls were small, but were feeding and growing. Grace was about three and a half pounds and Juliette was just over five pounds. I was anxious to get back home to Leo in Kerry. The hospital in Cork arranged for us to be transferred to Kerry and the morning we were due to leave, staff did some more tests on the girls before discharge. They discovered that Juliette had a heart murmur. The staff then decided to do an echo on both the girls just to be safe. That’s when they realised that things weren’t quite right with Grace. The team contacted Crumlin and arranged for Grace to be transferred immediately. She was seven days old and it was such a trauma, to be honest. We were worried before they were born, but they had seemed healthy and we had relaxed. Then suddenly Grace was being taken by ambulance to Crumlin Hospital and my husband and I followed behind in the car. We had to leave Juliette alone in Cork and that added to the upset and stress of the situation.
Prof McMahon met us that night in Crumlin. He explained to us that Grace had a coarctation of the aorta. This is a narrowing of the aorta which means your heart must pump harder to force blood through the narrowed part of the aorta. Two days after we arrived they operated on Grace. We couldn’t believe she needed heart surgery. It was terrifying. The surgeon, Jonathan McGuinness, was absolutely fabulous and came to see us after the surgery to tell us it had gone really well. He didn’t think there would be any more complications. My husband and I could breathe a sigh of relief for the first time in days.
Grace stayed on in Crumlin for about 10 days before she was sent down to hospital in Kerry because she was still being tube fed. We were with her the entire time. Juliette in the meantime had been transferred back to Kerry as well. It was a relief to finally have all three children in Kerry!
We were so lucky in Crumlin. Every person we met explained what was happening from start to finish. I think as parents you’re so traumatised you don’t hear the information the first time. They need to tell you again and again until it finally sinks in. Grace is still up and down for check-ups and is continually monitored by the team. She may need more surgery down the road. We don't know yet. For now she’s doing brilliantly and we're going for appointments every 10 months with Prof McMahon.
Grace is still a little bit smaller than Juliette, but she's as active and getting into as much trouble as her. They keep us on our toes. It was so hard on their big brother at the start because of all the upheaval. They have great fun now and they're great company for each other. It's lovely to watch them playing together and killing each other. All of the things that go with having siblings.
Having to go to Crumlin in an emergency and still visit the hospital regularly really puts things into perspective. We're one of the lucky families for sure. Grace’s condition was critical but very treatable. The support we received while we there from all the doctors, nurses and staff was incredible. It makes a difference when you’re away from your own family and you’re in a scary situation with your tiny baby. It was one of the toughest things I’ve ever been through. I just remember saying to my husband at one stage, ‘we have three children and I feel like I can't look after any of them.’ Grace was in Crumlin, Juliette was in Cork and Leo was in Kerry. You're completely helpless to be honest. In those circumstances, you're relying on family, friends and the staff in Cork and in Crumlin. You're putting your faith in them saying, ‘Look, I can't do anything here, you will have to do it for me.’
It's not until you're in this desperate situation with a small child, with a baby who so badly needs critical and urgent treatment, that you would give any amount of money to make sure that the resources are there, the equipment is there, the staff are there. You would give anything for your child. The best way you can help is to fundraise for CMRF Crumlin and to continue to highlight the work that they do, because every sick child really does deserve a chance.”
- Karen Morkan, Grace, Juliette and Leo’s mum.
With your support we will continue to do #WhateverItTakes for children like Grace.