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He was classified as a cleft palate.
All cleft palate babies are very difficult to feed. It was very difficult for my son to suck and swallow. No doctor was any help at all, so I had to devise my own system. Whenever I ran into other parents of cleft palate kids at clinics, we all asked each other, "How is the feeding coming along?" When my son was in the hospital for a related problem, all the nurses gathered around to see how I fed him. Some kids with severe problems have to have surgery within days of birth, often to put in a temporary plate so they can suck and swallow. Many of them suffer from chronic ear infections, too.
We went to regular clinics sponsored by the Dept. of Children and Family Services in Illinois. Each state has one. I ran into an adult who had gone to clinics in Kansas, to have a congenital heart defect repaired. They help financially if needed. At least they did in the past. Who knows what * has done to that program?
Anyway, at clinics, we saw a plastic surgeon, an ENT, a speech therapist, an orthodontist and a social worker. Believe me, some of these parents have it tough. I met a family with twin girls. I cannot imagine trying to feed two of them.
My son did have tubes put in his ears at four months. He had many ear infections. He had a surgery to correct his soft palate at fifteen months. He had a great plastic surgeon. The guy is gone now, but he was wonderful. He used to belong to a group who brought in kids from other countries to have surgery not available where they lived. He and his group covered all their expenses.
My son's teeth were goofy, possibly due to the same defect. He had quite a bit of orthodontic work, too. He did not need speech therapy. I worked with him at home.
He is 24 now, and has no problems. However, he will never be able to have his tonsils or adenoids removed, because they help him with closure and swallowing. Other than that, he is fine.
I have seen so many kids with corrective surgery, that now I can spot them right away. Most people cannot say that, given the wonders they are working with corrective surgery.
I ran into a family at church with a toddler who was going through a series of surgeries. I introduced them to my son, and we talked with them. The father showed me he baby pictures, to show me how far along the little guy had come. I was so touched, because he told me that he never showed the pictures to people.
If anyone here is struggling with a cleft palate baby, pm me. There is lots of support out there.
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