Starting life in intensive care - Leo's story

Like any first-time mum, Rachel was excited to meet her baby. However, despite a straightforward pregnancy baby Leo was born with an atrial septal defect (ASD), and transferred to the care of Great Ormond Street Hospital (GOSH). Here, Rachel tells their story.

The first hurdle

“One of the reasons we chose to give birth at University College London Hospital (UCLH) was because of its close connections with GOSH, but we never thought in a million years that we’d need to go there. Turns out, it was one of the best decisions we’ve ever made.”

As a first-time mum, Rachel had a problem-free pregnancy. There were no complications or indications that her baby might have a life-threatening medical condition. But when Leo was born, he was immediately taken to intensive care suffering from asphyxia (a lack of oxygen in the blood) and underwent therapeutic hypothermia treatment. Whilst initial test results following his treatment were all positive, it soon became clear that this was to be only the first hurdle he and his family would come to face.

“Although no doctor can give you a 100 per cent guarantee, we were hopeful that there were no lasting health issues,” says Rachel. “But one night while I was feeding him, the doctors came in on their rounds. A heart specialist came in too and told me they’d detected a heart murmur earlier in the day.

“I was devastated, not least because of what we had just been through already with him. This wasn’t how I’d imagined our first few days as a family. I remember them saying how ‘it may be nothing’, and how ‘sometimes these things turn out to fine.’ Leo was progressing well, so there was no huge concern. We were told to come back in a few weeks for a further check-up, and, after 11 days, we were discharged from intensive care.”

A hard decision

After Leo’s check-up, it became clear that he had an atrial septal defect (ASD): a hole between two chambers in his heart that prevented blood from being pumped properly. He was referred directly to GOSH and started attending the cardiology unit in October 2014.

In some cases, holes in the heart can close up on their own over time. “Leo was tolerating the hole fine,” explains Rachel. “He had none of the normal symptoms and side effects, he was growing and he was healthy. The specialists advised we take a wait-and-see approach, in the hope that the hole would close.”

However, a check-up at 18 months showed that the hole hadn’t closed at all, and was unlikely to do so. Cardiologists explained to Rachel and her partner that despite Leo’s seemingly good health, the hole in his heart increased the risks of future problems developing as he grew up. Therefore, it was decided that at just under two years' old, Leo would have open heart surgery to close up the hole.

“Probably the hardest thing to comprehend is putting your seemingly healthy child through a potentially life-threatening situation to protect their long-term health,” explains Rachel. “But we knew that we had to do it. I just remember thinking, ‘I so wish we could wait until he was just a little bit older,’ but in hindsight I’m glad we did it when we he was so young. He may have a big scar on his chest, but it’s only his father and myself who have the emotional scarring – and, really, that’s the way it should be.”

Thankfully, Leo’s surgery went well, and just 72 hours after the operation he was well enough to go home.

Grateful for GOSH

A few months after the operation, Leo is doing well. He loves to show off his scar. “He’ll show anyone and everyone,” Rachel explains, “but it’s the only way you can tell what he’s been through. Without it, you just wouldn’t know. People are amazed when I tell them.”

Rachel explains how thankful she is for the treatment that her, her partner and her son received at GOSH. “It’s all the little things that stick out in my mind and these are the things that I won’t forget. For example, the surgeon who briefed us on Leo’s surgery the day before the operation took the time to come and check how Leo was doing, even though he wasn’t part of the team that operated on him. And the nurses were fantastic, too - asking Leo the name of his teddy bear, telling him ‘mummy’s just got something in her eye’ when I broke down crying in front of him (which I did a lot!) – all these little things just made such a big difference.”

The family were also offered accommodation nearby for the duration of Leo’s stay on the high dependency unit. “We only live in North London, but we were still offered accommodation in Grafton House. We were treated exactly the same way as someone coming from another country, and it just gave us one less thing to worry about. Not having to think about public transport and only being two minutes away from the hospital made such a big difference.

“For me it was all the small things that enabled us to get through what is an horrendous ordeal for any parent. It made a huge difference to the whole experience. We can’t thank GOSH enough for everything they have done for us.”

Great Ormond Street Hospital Children’s Charity funds accommodation near the hospital so that parents can be close while their child undergoes treatment. Learn more about the ways Great Ormond Street Hospital Children’s Charity supports patients and their families