The hardest choice

There was jubilation in the Mizen family. Sharie and Ian Mizen were celebrating the birth of their second son, Ethan, who was only an hour old. Mother and baby seemed well. "He was a lovely baby," Sharie says. "I know that every mother thinks their child is really good-looking, but he had amazing big eyes and such a cute face." She was right: he was gorgeous, but when the consultant came to see him for a check-up, the news was not what the Mizens had hoped for. "Ethan is seriously ill and is going to need a very serious operation," she told them. There was a likelihood, she said, that he would be brain-damaged, and have both sight and hearing impairments.

Ethan had Craniosynostosis: a new word for Sharie and Ian, but one they would become very familiar with over the next few months. Craniosynostosis is the term for when the skull fuses together prematurely, before brain growth. Ethan's skull was fixed in a ridge at the top, which meant it had none of the flexibility of a normal newborn's skull. "An hour after he was born, my joy was gone and we were just devastated," Sharie says. "He looked normal: I kept looking at his eyes and ears, thinking, how could they be impaired?" The fact that Sharie had a Caesarian birth (because of complications at the birth of her first son) quickly transpired to have been a blessing in disguise: if Ethan had travelled down the birth canal, his bones wouldn't have crossed over, meaning that his eye sockets would probably have been crushed, and his nose and forehead would have collapsed.

However, his future as a healthy child was still very unsure. There was, as the consultant warned, the chance of brain damage. And if he was not brain-damaged, the fusion of his skull would mean that Ethan's head could become deformed as it grew. It was too much to take in. "We had a whole night to wait to find out about the brain scan," Sharie says. "I just can't describe it, really. There was me, and there was another mum in the ward next to me who was also wailing." The doctor came around that night, and told Sharie that the mother in the ward next to her had been told that her baby had a serious heart condition and was going to die in three months. "He said, my baby might be brain-damaged but at least it's going to survive," she remembers. "And I thought his perspective was so calm that it just made you get a grip and think: OK, it's true. I've got a child and I'm still going to have a child, so I've got to look at it like that." Stoicism was hard when the Mizen family were reeling with the shock of what this condition could mean, but there was nothing else to do. "It was hard but also strangely peaceful, because you are focused on what you have to do for your child," Sharie says quietly. "Everything stops, and that's the most important thing. It's a time when you find incredible grace and peace that you can't describe unless you're going through something very traumatic."

Thankfully, the method of birth had been a saving grace: the scan showed that Ethan's brain had not been damaged, and that it would grow normally. The tests were clear. "It was such a relief," Sharie says in her gentle voice. "It goes through your head - how am I going to do this? How am I going to manage this? It would have meant that he could never have had a normal life, and that the rest of my life would be spent caring for him. It sounds really selfish and awful, but those thoughts do go through your head, honestly. I thought I could cope with him being blind or hearing-impaired."

Despite the quashing of their initial fears, the road ahead was still long. Since Ethan's Craniosynostosis didn't have a genetic cause - it was just a freak happening - the testing process had to be even more exhaustive. After three months, however, the Mizens received good news: Ethan had no hearing defects as far as the doctors could tell, his eyes were fine, and his brain was in the clear. But that was only the start, because the Mizens now had to decide what to do about the shape of Ethan's head. It looked fine as a baby - a little pointed, nothing unusual; but as he grew it would grow too, and because of the fusion, it would grow abnormally. Sharie and her husband were faced with another decision: "The doctor told us that Ethan's head would have no width to it," Sharie says. "It would be extremely thin and would grow up and out - he would have a very high forehead and an elongated head at the back. A bit like a cycling helmet."

Ethan's brain would be fine, though there was a chance he would have slight vision problems. Essentially, therefore, any operation to change his skull would be for aesthetic reasons - and any operation ran the risk of being traumatic. It would mean cutting across from ear to ear so that the whole chunk of bone that was fused could be cut through, and then the front and back would be pushed together to rebuild the part that had been fused. The hospital advised, too, that any operation should take place before Ethan was six months old, because anything after that would be even more traumatic. It seemed then, says Sharie, that just when one set of questions was answered, the next set arrived.

"You think, do I need to cause my child pain? Will this traumatise him? Will it be awful? Will he remember it? Will he be scarred for life?" Sharie pauses. "And it's all my fault if he doesn't really need to have it. Any operation has an element of risk, but this is a three-month old baby who's going under general anaesthetic. Is he going to survive it, and do we want to put him through this?" The dilemma was, of course, that it was not his health but his appearance that was at stake. And, in theory, after your child has been faced with the possibility of brain damage, appearance is not the be-all and end-all. How does a parent deal with that? "You feel torn inside," is all Sharie can say. "You don't want your child to go through anything so painful and so traumatic. You want to protect them from anything that could hurt them."

They got their answer, though, when they were waiting to see the consultant. A little girl of about six or seven with the same condition as Ethan walked in. Everyone in the waiting room stared at her. "She obviously hadn't had an operation and the disfigurement of her head was pronounced," Sharie says. "We thought: that's what he's going to look like. I don't want my child to be stared at, I don't want him to be called names, I don't want him to have a funny-shaped head if he really doesn't have to. He would have been teased and I couldn't bear that." The Mizens decided that dealing with the trauma of being so conspicuous for the rest of his life would be worse than the trauma of the operation. And so, at nearly five months old, Ethan had the operation at Great Ormond Street, one of two places in the country that specialise in Craniosynostosis. "When he came back from his operation he had huge staples [holding his skull together], so it looked like he had a zip across his head," Sharie says. "But immediately you could see that his face shape had completely changed."

Ethan is six years old now, and hasn't needed a check-up since the age of 18 months - which is unusual, because some children need to have further operations as they grow, even into their teenage years. "It's amazing," Sharie says. "He's just fine, and we can get on with our lives." The aftermath of the operation hasn't been without its difficulties, however: "He became very unsettled in the night, and needed you physically to be with him the whole time. In some ways I can see that it has affected him in how he needs to be comforted, but again it's something you can live with." She smiles. "When you've been in that situation, you know it's nothing compared to what it could have been."