A new Hollywood movie Wonder, based on R.J Palacio’s best-selling book, and starring Julia Roberts, Owen Wilson and Jacob Tremblay is due on our screens later this year.
Telling the tale of a boy with facial differences who attends mainstream school for the first time in fifth grade, it shows how he and his family cope with the many challenges and issues that arise because of how he looks.
Craniofacial conditions are rare and, in Ireland, children with these conditions are treated at Temple Street Hospital.
One mum who knows all about the challenges involved with treatment, is Sarah O’Toole.
Sarah, Andy and their nine-month-old baby son Finn live in Wicklow. Finn was born with the craniofacial condition craniosynostosis, which is the premature fusion of one or more of the sutures of the skull resulting usually in abnormal development of the skull.
The condition usually requires surgical intervention, as left untreated, intracranial pressure can lead to visual impairment, sleeping impairment, speech and language difficulties, eating difficulties and possibly even an impairment of mental development.
“I’d never heard of it before,” Sarah explains.
While nothing was apparent at birth, Sarah’s GP noticed an unexpected increase in Finn’s head measurement at his two-week check-up.
Finn was referred back to Holles Street who confirmed that the fontanelles (soft spots) were still open. A brain scan was performed and thyroid checks were carried out a few weeks later.
All results were normal, but an X-ray revealed that the sutures of Finn’s skull were fused. The family was then referred to Temple Street.
“I was shopping when the doctor rang to confirm the diagnosis and mentioned surgery,” Sarah says. “Obviously I was quite distraught. The first thing I did was ring work and tell them that I was taking extended maternity leave so that I could look after my son.
“You hear surgery and in my head I thought, oh my God, the risks, what if he dies? It’s a hard one to take.
“You’re so careful of doing everything correctly and then they’re born and you think, thank God, that’s the hard part done. You bring them home, wrap them up in cotton wool and something that nobody can control happens.
“But every single day we’re thankful that it was caught so early.”
Through the Facebook page “Cranio Ribbons” and through the Craniosynostosis parents support page, Sarah learned about children of all ages having surgery to treat the condition. Finn was just four and a half months old when he had his operation.
The team at Temple Street gave Sarah and Andy the option of not proceeding with surgery but warned them that without it, his skull would be disfigured and there was a potential for other difficulties.
Detailing the day of surgery Sarah explains that Finn had a last breastfeed at 3am and then had to fast. “Finn was first on the (surgical) list because he was so small.” Once their son was in theatre, Sarah and Andy walked into town to have breakfast in an attempt to distract themselves from the agonising wait and clock watching. When they returned, they sat by his bed and waited for news.
“After surgery, Finn was hooked up to morphine. He had a drip, he had a drain coming out of his skull for the intracranial pressure. He had what looked like a turban on his head. He had four IV cannulas inserted.
“His eyes were swelled shut and he couldn’t see which caused more agitation,” Sarah added. “But that’s over the next day.”
While she says it was very hard to witness her son like this, the team in Temple Street had hugely prepared them. The Cranio Ribbons (Facebook) private parents group, also helped enormously, as parents of other children shared post-surgery pictures and discussed timeframes, offered support and discussed what to expect.
Sarah describes the first night after surgery as “the hardest night of my entire life”.
“Finn projectile vomited everywhere,” she said. “There were so many wires that once you picked him up, you couldn’t put him back down without calling for the nurse.”
The next morning, however, “he had a big smile for daddy” which Sarah jokes “both broke and fixed my heart at the same time”.
Finn has a scar that is “like a zig zag from ear to ear”. “With Finn they took out a rectangle on the top of the head and also put “Vs” in at the side of his head. They put bone grafts in at his temples.”
Because of their proximity to the hospital and the fact that Andy is a paramedic, the couple felt confident enough to take their son home just a few days later.
“Finn will be monitored until he’s 15,” Sarah explains. The team “are very happy with him. He’s developing normally, his head looks normal, his scar healed perfectly. For him I don’t think there will be any further surgery because it worked so well, but that’s not always the case for others.”
Family, friends and the parental Facebook group have been a huge support. A care package from the group, was sent to the family ahead of Finn’s surgery.
It included a teddy bear with a T-shirt saying “I’m a craniosynostosis warrior” as well as practical items for the parents and purple ribbons for raising awareness. These people are Finn’s “craniosynostosis family” Sarah says “even though I’ve never met them. But we’ll be going through this together for the next 15 years.”