When scans suggested that Simon Moore’s unborn daughter might have Treacher Collins syndrome, he already knew the map. He had lived it: underdeveloped cheekbones, malformed ears, profound hearing loss, a bone-conduction aid on a headband, staring, pointing, and years of school bullying he could not hide. The condition — mandibulofacial dysostosis — affects roughly one in 50,000 births. Intelligence is typically normal. Severity is not.

Simon, then about 30, and his wife Vicky, of Wymondham, Norfolk, had used IVF. Pre-implantation genetic testing that would have discarded embryos carrying the TCS mutation cost more than they could add to a second cycle. The chance Alice would inherit the dominant gene from her father was about 50 percent. A 16-week scan confirmed she had. They kept the pregnancy. Alice was born in February 2014.

Her form is milder than Simon’s. She has cheekbones. Her jaw is strong enough that she does not have the classic airway crisis. She does have downslanting eyes, a small nasal passage that makes her snore and run, a high palate that makes feeding slow, and ears without a canal. She hears through a soft-band bone-anchored hearing aid — the same principle as her father’s — with a later plan to implant an abutment in the skull. Reconstructive ear surgery, if she wants it, is her choice later.

Strangers were not gentle. Some called the parents selfish or cruel for “choosing” a child who would look like her father. One child called Alice a gargoyle. Vicky said they had not gone in with their eyes closed: a year and a half of genetic counselling preceded the attempt. Simon said he had never wished Alice free of TCS. What he could offer, that most fathers cannot, was a sentence she would not have to explain: “I understand.”

Treacher Collins is a chapter, not a life sentence. Airway, hearing and feeding need specialist teams. Appearance invites comment that has nothing to do with character. What the Moores argued on ITV’s This Morning in 2015 is simpler than the comment threads: a child is not a defect to be screened out of existence because her face will look like her dad’s. Alice still gets birthdays, school, friends and a father who already knows the weight of the headband.

Sources

• Daily Mail / SWNS interviews with Simon and Vicky Moore, April–May 2015.
• The Mirror and ITV This Morning coverage, May 2015.
• GeneReviews / clinical summaries of Treacher Collins syndrome (TCOF1 and related genes).