At birth, Dylan was diagnosed with a very wide cleft in his hard and soft palate, a floppy tongue, a small chin and – given those three characteristics – Pierre Robin Sequence. Here, Dylan's mum Catherine tells us why at 16 months old he and his family are taking part in a research project regarding clefts.
Participating in research
"In the clinic held before Dylan’s palate repair surgery, our consultant dispelled my dream that surgery would be a panacea for Dylan’s cleft-related issues. Yes, even as a mum of a baby with a cleft, I had clung to that myth.
"The consultant also made a point to warn us that sometimes more than one operation is needed. A baby born with a cleft may have surgery to close a gap in their lip. Surgery to repair their nose. One or two operations to bridge gaps in their hard or soft palate. Further surgery to mend tears that may develop in their hand-crafted palate. Yet more surgery if that palate needs to be adjusted to facilitate speech. Bone grafting to support their teeth growth and eating.
"One in 700 babies in the UK are born with a cleft – this means more than one thousand babies are born with a cleft in the UK each year. That’s a lot of surgeries. Children born with clefts also have feeding difficulties, dental problems, hearing loss, speech and language difficulties and, subsequently, developmental delays. So that also means thousands of children need hearing aids, grommet-insertion surgeries, speech and language therapy sessions, and developmental support.
"I had a healthy lifestyle before conceiving and was conscientious during my pregnancy. I have racked my brain asking what I did (or did not do) that may have caused Dylan’s cleft. Science, I am told, has no answers. So far, science only knows that for too many us, in the first few weeks after conception, our babies’ facial features just don’t come together.
"Research, we hope, may reveal more. My family and I are participating in this project to help to find ways to prevent clefts and improve the lives of children born with them.
"Shortly after Dylan was born, our respiratory consultant at Great Ormond Street Hospital (GOSH) said of Dylan’s laborious breathing, 'It is as if he is jogging all day and night'. This worsened when he tried to feed. As is typical for babies with clefts, he had little suctioning power. His little heart raced as he tried in vain to pull milk from a bottle or breast. Dylan burned more calories from drinking and breathing than he consumed. He did not gain weight as babies should. We anxiously guarded against the risk of 'failure to thrive'.
"By six months old, he outgrew the breathing issues common with Pierre Robin Sequence. And we celebrated. What remained were challenges primarily stemming from his cleft palate, and chief among those was feeding difficulties.
"Dylan received his first feeding tube shortly after he was born, as is common with lots of children with cleft palate. This tube allows Dylan to get enough nutrition but it also allows fluid to slip back up his oesophagus, burn his throat, and come gushing out. Vomiting frequently and needing to repeatedly replace the tube have caused trauma such that Dylan is very wary of food.
"Having virtually no hard palate, when food made it into his mouth, it then went up into his nasal cavity. If he was able to get food to the back of his mouth, he struggled. Apparently we use our soft palate when swallowing. Dylan had no soft palate.
"Dylan’s palate repair surgery at GOSH has improved his drinking experience immensely. I am in awe of the work done. But as forewarned, it did not solve his feeding issues. At 16 months, Dylan has not yet weaned onto solids or off the feeding tube. We are delicately working to replace his fears with the pleasure of playing with, smelling, tasting and – hopefully – eating food."
Getting involved in research
"Shortly after Dylan was born, the GOSH Cleft Lip and Palate Team’s research nurse invited us to participate in a research study. She explained that this long-term project is being conducted across the UK to understand what causes clefts, the impact of clefts on families and how care of those born with clefts can be improved."
"Participating in this research project is not taxing and is very much worth the potential benefits. Every once in a while, Dylan’s dad and I each receive a survey to complete. For me, this is a good excuse to go to a café, sit for an hour, and tick which options apply to us. Dylan’s dad and I have given our saliva samples for DNA analysis and contributed Dylan’s tissue sample, which was taken during his palate repair surgery. There will be more surveys over time and, I am told, information from Dylan’s health records will be requested."
Research built on past generations, providing hope for those to come
"The myth that surgery is the panacea for cleft-related issues exists for a very good reason – in the last few decades, surgeons and healthcare professionals have made great strides in caring for children with clefts. These gains have resulted in part from the willingness of other children and their families to participate in research, and their courage to try untested procedures. Our participation is a thank you to them and a continuation of their tradition.
"Should you and your child participate in the research project? I think so and I hope so. The duration of the study may mean that our children may not directly benefit from its findings, but the next generation will. Science tells us that people born with clefts are more likely to have children with clefts. So perhaps the results from this invaluable study may improve our grandchildren’s lives."