Treacher Collins Syndrome
I couldn’t have dreamed up a better precursor for my forthcoming book Saving Sebastian, due out on 1 July. But honestly, I hadn’t so much as whispered in the ear of the BBC.
The documentary, So What If My Baby Is Born Like Me?, went out at 9pm on 19 April on BBC Three, but the main players were also interviewed on various newsy programmes. The story featured Jono Lancaster, and was both poignant and challenging. Jono has Treacher Collins syndrome, which essentially involves deformities of the face and ears, but normal intelligence. And Jono’s intelligence certainly shone through, as well as his honesty, courage and thoughtfulness.
The thrust of the programme was whether or not he should father a child naturally with his girlfriend of four years, Laura. They both want children, but Treacher Collins is hereditary, and they run a 50/50 chance of having a baby with the same condition. But no one can predict how severely it would be affected. As well as the distinctive facial irregularities, some children require tracheostomies and tube feeding, some are profoundly deaf, some have cleft lips and palettes. In the course of considering their options, Jono and Laura met a little girl, Maisie, and saw firsthand what such anomalies mean to parents. And to the child.
And Jono knows only too well the reactions anybody with the condition will encounter. He’s even been vilified for daring to have a relationship with a pretty girl! And Laura is indeed very attractive, as you can see. Jono’s own biological parents were so appalled by his appearance that they rejected him from birth. He was taken in at two weeks of age by an amazing woman who’s fostered over twenty children. She admitted that Jono had occupied a very special place in her affections and she’d formally adopted him. Watching them together was a delight.
But before you condemn his natural mother, ask yourself, how would you react to being handed a baby looking so different from your expectations? Or walking down the street with a child whom everyone stares at? Take a look at these photos and imagine the scenario; ask yourself the questions, if you dare. I studied dozens of them and I confess I didn’t like the answers.
However even Jono’s adopted mum couldn’t help him with the quandary he was in now. As she wisely said, you might think you know what you’d do in these situations, but no one can say for certain what they would do in reality. You can’t know until it happens.
It’s a tribute to her love and acceptance and sound common sense that Jono’s instinctive preference was to adopt. Laura though, wants her own child. In an effort to work though the possibilities, they seek advice and counselling; they visit families who’ve faced some of the same dilemmas. One option they have is to go for IVF with PGD – essentially this involves creating an embryo using their own sperm and eggs, then testing it to see if it carries the defective gene. Jono seems initially to be labouring under the mistaken idea that the faulty gene would simply be removed. When he finds that the whole embryo would be destroyed, he’s morally outraged. For him this is ‘an insult’, ‘disrespectful’ to all people with a deformity or genetic disorder. The fact that he himself wouldn’t exist if this facility had been offered, gives his outrage special emphasis and extra weight.
Listening to this young couple grappling with the dilemma was peculiarly arresting even for battle-hardened me. Something so natural as having a child is for them a major issue with endless questions, doubts and fears attached. Jono’s ‘morally wrong’ argument is a massive stumbling block to progress, but in the end their conclusion is that, for them, it feels right to go for IVF with PGD, to have a child without the defect. ‘Morally wrong’ for Jono it might be, says Laura, but even so ‘it’s right’. ‘Definitely right’ for the child, Jono concedes.
The scenario in my novel is different, though many of the issues and questions are similar. Sebastian is four years old, and he has a rare blood disorder. But he’s stunningly beautiful to look at. His parents are considering having a baby by IVF with PGD to save Sebastian’s life. They too have reservations … But in this case, I’m not going to tell you the outcome!