Dr. Motoki provided us with information and an estimate of surgery times. It is looking like she will be needing a prosthetic palate put in which can be done shortly after birth if needed to help with feedings to allow her to be able to form some type of suction with her bottles. At around 12 weeks old, he will repair her lip which depending on the severity may end up being divided into 2 surgeries, one at 12 weeks and one at 6 months. Below is a picture of what we are guessing her lip looks like and what the repair will look like:
At 9 months old, they will repair her soft palate which will allow her to be able to have proper speech. Without this repair, these children struggle and are most of the time not able to ever be understandable with speech because the soft palate is what allows us to speak properly.
Starting at 3 years old, the repairs will begin on her hard palate where the finalizing of drawing the palate together will occur. The next two pictures show how the palate is repaired:
If necessary throughout all this time, she may need an ENT to put tubes in her ears multiple times due to being more prone to ear infections with the cleft interfering with the middle ear and proper drainage.
Orthodontic surgeries may and most likely will be needed as she grows and braces as well. Nose, lip, gum and palate touch ups will be done as she is getting a little bit older if needed to refine shape and function. Speech therapy will be needed to help her learn to properly talk and eat throughout this time as well. Weekly weight checks will be done with her regular pediatrician to make sure that she is thriving and not burning too many calories while trying to eat.
Dr. Motoki explained in a really neat way how the cleft is formed in utero. When a fetus is forming in utero, it basically starts out clefted and as separate sides, early on in the pregnancy, something occurs (a genetic issue combined with an environmental issue) and causes those sections to not quite meet properly. The lip and palate develop separately allowing for some children to have just a cleft lip or just a cleft palate. Then there are the situations like ours where both are not able to form together completely. Medical professionals have made great advances in treating children with clefts and can do a lot to help these children lead a normal, healthy, happy life.
In January, we will be meeting the the entire Cleft Palate Team up at primary's which includes: Orthodontist, our plastic surgeon, ENT (ears, nose and throat), Genetic counselor, Speech Therapy, Feeding Specialist, Social worker, Nursing staff and Audiology. At this time and they suggest yearly after, Scott, Bailey and I will get together with this team to get updates and make a plan for the upcoming year for Bailey.
We will start bringing Bailey into Dr. Motoki shortly after delivery.
It feels really good for us to have a Surgeon picked out and plans made. We feel ready to go and more prepared now. We can't wait to meet our sweet little Miss Bailey anytime now!