Heart surgery at six days old

“You never expect it will be you that has a poorly child. For us it was a stark reality, and a journey that left us irreversibly changed.” 22-month-old Robert underwent open heart surgery at Great Ormond Street Hospital (GOSH) when he was just six days old. His mum, Jennifer, tells their story.

The tiniest chance

“At my twelve-week scan, we were told that Robert had a one in five chance of having Down’s syndrome, and a one in one-hundred-thousand chance of having a major heart condition. It turned out to be the latter.”

After an amniocentesis test and further scans confirmed that her baby had transposition of the great arteries, Jennifer was induced ten days early and gave birth at University College Hospital London. As soon as he was born, Robert was taken away and kept alive for five days before being transported to GOSH and undergoing open heart surgery at just six days old.

Robert in hospital

The operation

“We thought we’d prepared ourselves for the operation, but I don’t think you really can,” recalls Jennifer. “Handing him over to the nurses on the morning of his surgery was the hardest thing we’ve ever had to do. But during his operation, we were actually quite calm – we knew he was in the hands of the doctors, and whilst the hours did tick by slowly, we were just about OK.”

It wasn’t until after the operation that it hit the family how serious it had really been. “When we saw Robert for the first time after surgery, it took our breath away – alarms were beeping, he was heavily sedated and nurses were rushing around to try and stabilise him. He just looked so fragile.

“He had a lot of trouble recovering, and we couldn’t eat, sleep, or do anything while we waited. He suffered major blood loss, organ failure and kidney malfunction. For the nurses, these are relatively normal complications, but for us it was terrifying. It was like being on a rollercoaster that you can’t get off.

“Throughout his recovery, he often took two steps forward and one step back. Two weeks after surgery his chest wound hadn’t healed up properly so he had to be operated on again, but gradually lines and wires were removed and we were eventually moved up to Bear Ward. This was amazing – we had our own room which meant I could spend my first night with him.

“Robert was five weeks old by the time we were able to take him home.”

Problems feeding

“Since the operation, we’ve had ongoing problems with Robert’s feeding and development. His vocal chords were damaged during the surgery and became partially paralysed, making it hard for him to coordinate sucking and swallowing. This meant it took more energy for him to try and feed than he was getting from the milk – he’d take 10 millilitres and then fall asleep. We tried to feed him via a naso-gastric tube, but he was vomiting so much due to reflux and other undiagnosed gastric problems.

“At nine months old, the surgeons at GOSH fitted him with a PEG (percutaneous endoscopic gastrostomy) feeding tube straight into his stomach. For many months after that he was hooked up to a feeding pump for 20 hours a day. The problem we had is that he wasn’t getting the nutrients he needed to grow. He vomited everything back up – three hours would go by when he’s hooked up to the pump, and then he’d vomit about two hours’ worth of milk."

The road ahead

“In September, aged 16 months, he put a bit of food in his mouth for the first time. It’s been a slow and difficult journey requiring so much patience, but now he has not been fed via tube for nearly a month. His weight gain has been very slow since he was born, and some days he will only eat a few bits, like crisps and chocolate. He’ll have the tiniest bit, shake his head and say, ‘nope – all done’.

“He’s come on really well, but all of this has meant some of his development has been delayed – for example, he took his first steps around Christmas, age 20 months.”

Advice for others

“Before Robert was born, we met with an ICU nurse called Pippa who showed us around the wards and where we would be. It was really emotional to see, but I think it was good to be completely immersed in it beforehand. I think if we’d have seen it fresh, it would have been even more of a shock, so I’d suggest everyone who has the opportunity to look around should go for it.

“I think one thing that we struggled with was the intimacy of the intensive care ward. It’s a very strange environment, very much like being in a bubble and you have no idea what is going on in the outside world. We found it very difficult to accept help from our family and friends who wanted so much to be there to support us. We never expected that to be our reaction, so I would suggest have these conversations with family beforehand, and warn them that the best way they can support you is perhaps not to always be there, but to help in other ways, like looking after things back at home.”

Buried under the fear and anxiety that comes from being in hospital, it can be hard for parents to see a way out. Thinking back on their time at GOSH, Jennifer wanted to reassure parents who find themselves in similar situations.

“It does get better. Just take one day at a time, the recovery is unlikely to always go in the right direction but it really is amazing what these tiny people can achieve. We will always be extremely grateful to GOSH for saving our baby boy and getting us through the hardest time of our lives.

“When you discuss with your partner about starting a family, those conversations are often full excitement at the thought of adding a beautiful child to the family. You never expect it will be you that has a poorly child. For us it was a stark reality, and a journey that left us irreversibly changed. But he really is such a special little boy that brings so much joy to everyone he meets – not a day goes by that we don’t appreciate that we were lucky enough to bring Robert home from hospital and have a future with him very much in it.”

Donate now

As part of the Heart to heart appeal, GOSH is raising funds for two new Echo machines so we can continue to provide world class care to children with heart problems. With your help, we’ll be able to see a child’s heart so much clearer and save even more lives. It’s not just a machine, it’s a life saver.