As you probably know we are expecting a baby girl in September. A previous ultrasound showed that Baby Lioness has a narrow jaw. That’s a indicator of Treacher-Collins Syndrom (TCS) – a rare genetic condition which effects the development of facial bones.
Duane has TCS so our kids have a 50/50 chance of having it as well. On the bright side, we know why she has a narrow jaw and what else could come with that. Every case of TCS is different as far as which facial bones are effected and the severity.
Someone with Treacher Collins Syndrome may have malformed cheekbones, chin, nose, jaw and temples. Eyelids are often drooping, and there may be a small nick in the lower lid. The ears may be malformed or completely absent. Hairline and palate may also be unusual. Breathing problems can occur as well. Treacher Collins Syndrome is not progressive. Children do not get worse. In fact many features can be improved by growth and by surgery and other treatment. www.treachercollins.net/Syndrome
My husband Duane doesn’t have cheek bones and is deaf in one ear and 30% hearing in the other. He had a clef palate and was born with little ear nubs. Now he has prosthetic ears and a bone-anchored hearing aid (BAHA). He has a narrow jaw too, but it didn’t cause problems with breathing.
On June 19th we met with a specialist and had another ultrasound of our cute little Lioness.
She likes to have her hands by her face, making hard to see much (the dot on her forehead is the umbilical cord floating in front of her face). As much as we can tell, her lower jaw does look small. Also there’s lots of amniotic fluid around her, which means she’s probably not drinking it, indicating difficulty swallowing, possibly due to a narrow airway which means potential problems with breathing.
In July, we’ll meet with a specialist in the City 4 hours away and do another ultrasound. Please pray Lioness won’t have hands in her face and we see a perfectly formed lower jaw. Our little girl has until then to drink up, if she wants to be born in here, otherwise we’ll have to go to the City for birth, in case she has difficulty breathing.
