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Cleft-Craniofacial Community Stories

The Sivertsen Family

William – Hawaii Bound

William was born on March 16th, 2000 at Arnold Palmer Hospital in Orlando FL. He was 12 days early. They had done an ultrasound the week before because they were afraid he would be over 8 lbs. If he had been born any later, he probably would have been. When the ultrasound was done they told us we were having a boy and at that time he was around 6 lbs.

I went into labor on March 15th and was in labor for a good 13 hours before he was delivered with forceps. The doctor finally delivered him and the first thing I remember him saying was he has a cleft lip. I couldn’t think. I was in denial. I was angry and scared. I was afraid he wouldn’t be accepted in my husband’s family. I then held him. He had the longest eyelashes I have ever seen and of course the pointy head that all newborns have. They cleaned him up and we took pictures then they took him away for his first real bath.

Post-op Peanutbutter Face

I was then alone without him for about 2 hours. In that time, all I wanted was to get up to my room and hold him. I finally got up to my room and tried to feed him. As many parents of children with clefts find out, he had a problem eating. He also stopped breathing while I tried to feed him and they had to take him away, but he was ok. I continued trying to breastfeed him, but when I look back now, I could never give him enough because he was always crying. He also had no sucking ability.

The next day, the 17th we found out that surgery had been set up for the 18th to correct his lip. We met the plastic surgeon who scared us a little because he was a “get down to business” doctor. We knew nothing about the surgery except what he and the nurses told us. I was able to stay in the hospital an extra night and was able to take him to get ready for the surgery. Will was taken down to the extra care unit at 4 am. I was then sent back to my room to “relax and rest.” I had so many feelings — every feeling in the book — but I was mostly scared. My newborn son of 2 days was taken away from me for surgery.

At around 10 am, I prepared to go down to take him into surgery. I went down to extra care and held him, iv and everything, one more time before they took him away. I have a picture of myself holding him with a look on my face. Everyone says that I look mad. I wasn’t mad, I was tired and scared.

Will’s new “Do”

They took Will in for surgery at 12:00 and they reassured us that it would be fine. We were all alone and had no friends, no family, no other parents who had been through this before with us. We felt very alone. The doctor came out of surgery at 2:30 very joyful. He was very pleased and said we would be too. We were. We were pleased with how his lip looked but most of all we were pleased that there were no problems. We were told we could take him home the next day. We were so happy.

The next day, we went back to the hospital only to find out that Will wasn’t eating and therefore we couldn’t take him home. He would remain in NICU for another day. We went home angry that we couldn’t bring him home when we had been told by the doctor that everything was fine. We didn’t know at the time that children with clefts have a hard time with sucking. We went back on Monday. Will was now off the monitors, and if he had a good day we could take him home. He did and 5 days after he was born he was released.

Will had many problems over the next month. He developed colic, lost weight, and threw up every time he ate. He did have an excellent recovery from the surgery, but we didn’t know he would have so many other complications. He had to be put on a schedule of eating every 3 hours and for only 20 minutes at a time. If I let him eat any longer than that, he would be burning up calories and so I had to time his feedings. After a month of this, we finally saw an occupational therapist who put him on the Haberman feeder. He started to thrive right away. He gradually gained weight, but we still had to feed him every 3 hours.

At the age of 4 months Will was put on solids but still had problems keeping food down. We didn’t know at the time that he had reflux disorder. He did still gain weight and he loved his solids. When he was 6 months old, we moved back to the Northeast where we decided to take him to a GI specialist. He was put on anti-reflux medication and once he started that he kept his food down. Our battles with weight gain were finally over.

Will had his first team meeting in February of 2001 and they were very optimistic. He wasn’t taking that much food, but other than that he was doing great. He had only one ear infection and one upper respiratory infection.

The Sivertsen Family

William started going to daycare when he was a year old. It was there that we noticed he was keeping up with kids his age, but he got sick a lot. He has terrible allergies which led to ear infections and upper respiratory infections all the time. When he was 16 months old, Early Intervention evaluated him and the only area he lacked in was speech. He qualified for speech therapy, but just made it. He was only about 4 months behind.

When William was 23 months old, he went for his 2nd team meeting and some fluid was found in his ear. We will be keeping an eye on that. He has speech therapy once a week at home and is doing great. He also is very smart. He knows some numbers, colors, and letters thanks to school. William will need to have a lip revision, a bone graft, and surgery on his nose. We hope that he won’t need any more but thanks to the support groups and websites we’re involved with, we now know what to expect. His surgery was done so well that many people don’t know he was born with a cleft. The children in school know and have been shown pictures. They are very interested in learning about it and I am more then happy to inform them. I think these kids may benefit in the long run for knowing William.

William is now 3 1/2 years old. It has been a long road, but we have learned a lot in these past 3 1/2 years. He has had 2 additional surgeries since he was 1 year old. He was experiencing many ear infections and because of that we opted to have tubes put in. He has had only 1 infection since then. This past January, we opted to have his lip revision done. That was also very successful and the scar is only visible when he has been in the sun. He is still due to have a bone graft and a full nose revision but based on the success of his first 2 surgeries we are confident that those will be the last. We will give William the choice about his nose he may decide he is fine with it.

William has also had speech therapy through Early Intervention for 18 months. At this time he is age-appropriate in all of his speech sounds. He is a model student and has many friends. He will tell you every dinosaur that walked the earth, he is social but shy at times and will not hesitate to tell you he has a cleft. If there is a show on TV that features a cleft, we point it out to him so he understands that many people have them.

William is lucky in that he has a loving family, supportive school and teachers, and friends. We don’t know what is in store for William, but because of what he has gone through and our support we hope that he grows up to be a successful person. As you can see William is a happy little boy and we are thankful every day that we have him. He loves to show off and he is a camera hog!

I hope that our experiences can help another family.


Last Updated: Jul 24, 2006