Still a champ!

Sometime during the spring of 1993 I went for a routine ultrasound for my second child. When my Obstetrician called me later, the news was startling. She said that the technician did not see a stomach in the baby and I had to go to another hospital to have a higher lever ultrasound. I remember her telling me that if it revealed the same thing, I would have to abort the pregnancy. ?!?!?!? WTF?? Talking with the tech during the second ultrasound I found out that sometimes the stomach can be hard to view, depending on the machine, the level of experience of the tech, whether it is full or not, and that from what she could see, it was completely fine. Whew! She could see the sex of the baby too, a boy! Great, we already had a girl! But then she also saw something else. He had a definite cleft lip. She wasn't able to see the palate at that point but wanted to get us as much information as possible and either brought someone in to talk to us then, or scheduled an appointment pretty quickly to help us understand all that was happening. To be having a child with a birth defect was difficult, but of all the ones he could have, they told us a cleft lip was surely one of the easier to treat. We talked with a surgeon and other members of the team who would eventually care for him and we became a little more at ease with it all. I went to my family dentist who loaned me medical books to view and read about some of what we could expect. I looked at the pictures and remember just crying and crying, needing to get that emotion out about how he would look, and then tried to move on and finish out the pregnancy. Labor and delivery came pretty quick, my doctor didn't make it to the hospital in time and the resident delivered our little Ronnie. A small team was there in case he had special needs and I remember asking my husband how bad it was, how he looked. He said it was just fine, not bad at all. And when I saw him I was relieved because even tho it was a complete unilateral cleft lip with the palate open as well, to us he was just a sweet, precious little baby boy. Beautiful.

His surgeon stopped in to see me after his birth and she said they would schedule his first procedure about 8/9 weeks later. I was released the next day and given preemie bottles with nipples that had to be cross cut so that instead of sucking, which he couldn't do, the formula would almost pour out. A bit scary, but we managed after some coaching by one of the women on the team. When surgery day was upon us it was agonizing to turn him over to the doctors. They weren't sure why we were so upset as they were starting to repair the problems, first the lip, and then about 6 mos. later, the palate. But it's heartbreaking to put your child into the hospital. When I first saw him after the surgery, again, I cried. He was all bruised and red and swolen and bandaged and just laying there helpless. Only about 9 weeks old. To keep him from touching the area, we were given 'no-nos', plastic sleeves that velcroed on and kept him arms straight. He looked like he was wearing two casts and between them and the stitches and the swelling, what a sight he was. But what a little trooper! He did so well with it all.

Since then, he's been thru different procedures, but has never complained. He's had tubes put in his ears, bone grafting from his hip put into his mouth, etc, Right now, he is at the stage many kids his age are normally dealing with.... braces. Today he had another oral surgery. He had to have part of the gum cut to expose a tooth next to the cleft so that his orthodontist can get the braces attached there. It went very well and other than missing gym class the rest of the week, he can return to school tomorrow. All soft foods for a couple days, but oh how he loves the strawberry and chocolate milkshakes he's getting!

The medical team that has been treating him all these years is the best! Every year or two he's evaluated by a plastic surgeon, ear-nose-throat specialist, dentist, audiologist, speech therapist, pediatrician, and a social worker. Someone is always available for any questions or concerns and they have all been wonderful to our family over the years. The appointment used to be a full day but now that he's older they get us to see each member of the team in about 4 hours. Alot of other children are at the team office when we go. Some have muliple deformities including club feet and hands, other facial issues, some have just the cleft lip or just the palate and to different degrees. There are children who have bilateral clefts where both sides of the mouth are affected.

Overall, our son has done very well. He's never needed anything too extensive past his first few surgeries. He didn't require speech therapy and has not had excessive ear infections or fluid that the tubes weren't able to correct and continues to do well in school. For the most part, his fellow students are good to him and I've never had to address any teasing or ignorance.

In the future, he'll have a tooth or two implanted into the bone that was fused in between the cleft and then depending on how he feels about his appearance may opt for some rhinoplasty or lip revision surgery when he's a little older. For now, he's more worried about beating the expert level on guitar hero and whether he's getting as many baskets at the court as his friends are. Girls are in the back of his mind, but I hope when they become a more serious interest they will be kind about his mouth and his scars. He's starting to get some facial hair so eventually he may decide that a mustache is right for him. But anyone who spends 10 minutes with this kid would know he's kind-hearted, funny, polite, generous, and a great joy to be around. And quite handsome, if a proud loving Mom can say so!!