Jerry-Leigh’s Story
Jerry-Leigh’s son was born with a rare Tessier facial cleft. She wants to raise awareness of his condition and share their story with us.
Charlie was diagnosed with a cleft lip and bilateral talipes at our 20-week scan; he measured a small head, which made professionals think there was more to it than what meets the eye.
After many invasive tests, they all came back clear, even after suspecting numerous syndromes. Three weeks before my due date, my waters went. After two days of slow labour, the medical team sent for an emergency c-section, and Charlie was born in June on his mummy’s birthday.
A full Tessier facial cleft includes the scalp, nose, eyelid, and upper lip. Because of the rarity and severity, we were referred to genetics, and they found a diagnosis of vascular EDS, which is hereditary. After living all her life not knowing, Mum also got the diagnosis of EDS even though she was born with no health issues.
An amniotic band had formed around Charlie due to a lack of collagen and weak arteries (which weren’t detected), resulting in his full facial cleft and talipes.
After surgery at four days old to close the scalp, then a three-in-one surgery to reconstruct his face at Great Ormond Street at 18-and-a-half months old, he is now 1000% #cleftstrong.
After surgery at four days old to close the scalp, then a three-in-one surgery to reconstruct his face at Great Ormond Street at 18-and-a-half months old, he is now 1000% #cleftstrong.
Charlie couldn’t have bossed it any more than he has. He’s still going through treatment for his feet and more surgery on his face, and saying that I feel proud doesn’t even cut it. This boy is an ultimate warrior in more ways than one.
Thank you to Jerry-Leigh for sharing your story!
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