“We wanted to take part in research looking for genetic and lifestyle factors that might cause cleft lips and palates to help prevent other parents having to go through all of this.”
An ultrasound scan when Hannah was 20 weeks pregnant showed baby Oliver would be born with a cleft lip. The family was referred to Great Ormond Street Hospital (GOSH), where they met surgeons and nurses in the Cleft Lip and Palate Team.
Hannah’s scan couldn’t show whether Oliver would also be born with a cleft palate, which would require more significant surgery. Once Oliver was born, a specialist from GOSH was able to confirm he only had a cleft lip and they could move ahead with treatment.
“We had some great breastfeeding support at home after Oliver was born,” says Hannah. “His cleft lip impacted on his breastfeeding in that his latch just wasn’t as good, which meant he was taking in air and could feel uncomfortable “
Arriving at GOSH
Hannah remembers what it was like to come to GOSH with Oliver and his father Alan: “It felt like we were going somewhere really set up for children. Oliver was a baby so he didn’t care, but for us it seemed friendly.
“The surgeon was very happy to talk to us through everything and answer any questions. There was also a cleft nurse available and the ward staff were really nice too.
“There was a lovely sensory room to take Oliver to as well. That’s the difference with GOSH: you can see the extra charity funding and can appreciate the difference it makes. Working in the NHS myself, you don’t take that for granted.”
While GOSH carries out 160 cleft lip and palate operations on babies every year, Oliver’s procedure was particularly special because it featured in an episode of ITV’s Paul O’Grady’s Little Heroes.
Hannah explains the procedure: “When you saw the gap in his lip, you might think that it would need things to be added but really the surgeon had everything there. Oliver also has a gap in his gum so he needs a bone graft in later years, with surgeons taking bone from his hip and placing it in his gum.”
“On the day of the surgery we were anxious because he was so young. We also loved the way he was, so there were some mixed feelings. We knew it was right for him to have the surgery, but we also loved his face the way it was and in some ways were sad it was going to change.”
Taking part in research
Hannah says it took Oliver just a couple of weeks to get back to his normal self after his surgery. TThe family is now taking part in a research project called the Cleft Collective which looks into the causes of cleft lips and palates. This will be hugely important for families going through what Oliver, Hannah and Alan experienced.
“Oliver, myself and Alan have all provided some DNA for the study,” says Hannah. “I’d not known a huge amount cleft lips before. We worried that there was something we did to cause this but there isn’t. No one knows why it happens.”
Oliver is now out of hospital and is enjoying life at home, as Hannah says: “Life will go on as normal until he’s a bit older. He will return for a few appointments and checks that all is okay and then come back for more surgery when he’s around nine years old.
“Oliver’s scar is healing well. People say they wouldn’t even notice it anymore. When I look back at photos of him, I’m struck by how different he looks. Day to day, I’m used to it now. When I look back at those photos, I get quite emotional.”