Just one of these cases is enough to discourage any mother from breast feeding. Having had a very difficult time giving birth, to end up having a cesarean I was too feverish after the birth for the next 48 hours to really think of this. I greatly admire those mothers who have the courage to extract their milk for their babies!
Steve's condition made feeding and sucking extremely challenging. It was almost as if the milk was being put directly into his nose! In our case a nurse suggested cutting a small " X" in the nipple so that he would not have to try so hard. This also meant though that we had to watch him so as he did not take too much milk at once. Another major problem was that he swallowed enormous amounts of air when he did drink his bottle ..... and as all mother's know that leads to abdominal cramps. Steve rapidly drank three ounces of milk every three hours ... night and day ... never an ounce more! And I do suppose we were lucky because only once did he choke on his formula .... with his father who rapidly turned him upside down and the situation returned to normal. (although I must admit it took his father sometime before he accepted to remain alone with his son, it had scared him so much!)
We live in a small town where the surgery is not performed. We were referred to Ste Justine's Children's Hospital in Montreal. Seventeen days after his birth Steve was already being evaluated and a group of medical experts took the time to explain what would happen through the next 18 years of his life with them. It seemed a lot to absorb so rapidly but today we realize that that day prepared us for the years to come. We were told that Steve's case would initially require three operations ... at three months, then six months then at one year of age. They reassured us that if everything went all right he should not need another operation until preschool age, when they would do some plastic surgery to eliminate as many of the scars as possible. Through all these years they assured us that he would be followed for any other eventual problems due to this malformation. Most kids have problems with their speaking. Also, some families have a hard time dealing with this visible malformation and the social development of the child is sometimes hindered so they are followed closely on all plans. At least once a year he would be evaluated by the team to correct any possible problems as soon as possible.
The first operation
Steve was three months old when they did his first operation. It consisted mainly of closing the right side of his lip and the first third of his right side palate. We had started a few weeks before giving Steve his formula occasionally with a glass since during the first week or more he would not be allowed to drink with a nipple. The suction caused by drinking with a nipple could have caused the reparation to fail. At the first meeting in January, this had been explained to us so we carefully avoided pacifiers too. Sleeping on his stomach was also prohibited .
I spent seven days sleeping with him at the hospital and then we brought him home. Already his appearance was less frightening. It also helped him greatly to drink his formula.