Wednesday, July 21, 2010
Meeting with the Cleft team
So the next thing we did was setup an appointment at Children's Mercy with a cleft team or some call it a craniofacial team. There were actually a couple of teams and they just randomly assigned us to one.
When I scheduled the appointment they told us we would actually meet with the whole team in one visit. The team would consist of a pediatric surgeon and his/her nurses, an orthodontist, a speech pathologist, an audiologist, an otolaryngologist, a social worker, an occupational therapist, a nutritionist, a pediatric dentist, an prosthodontist, I think that was all. . . So we were expecting a very long first visit!
We met with the team but not everyone that is going to be on his team but the main people at least. The surgeon was very nice and tried her best to explain stuff to us but without the baby actually being there it is very hard to give any type of definitive answers. . .The occupational therapist gave us some sample bottles that babies with cleft's typically use and the nutritionist explained as much as she could about issues that babies with cleft's have including the possibility that he would not be able to directly breastfeed. This is probably the hardest thing for me. I breastfed both of my other two kids almost exclusively for at least a year and now I wasn't even going to be able to? Wow, that was hard for me to accept, especially because I still want him to have breast milk and to give it to him would be a lot of work. So unless he has most or some of his palate he won't be able to directly breastfeed and I will have to continuously pump and feed him through a bottle. I am not looking forward to that! But I know it's the best thing for him so I will do it regardless.
The surgeon also explained to us that typically he will have his first surgery to repair his lip around 4 to 6 months old. They generally correct the palate around 12 months old. But depending on the severity of his lip and palate he could need other surgeries to correct his gum line and/or different parts of his palate.
Overall, I really liked the team we met with at Children's Mercy and felt like this is the best choice for our little boy. Brianna had gone through Children's Mercy for a cardiac catheterization and I was very happy with the way things went for her at the time. So our next step with them would be to make an appointment after the baby is born to get more answers and setup dates for surgeries.