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 Zantac and once he started that he kept his food down. Our battles with weight gain were finally over.
He had his first team meeting in February of 2001 and they were very optimstic. He wasn't talking that much though, but other then that he was doing great. He had only one ear infection and one URI.
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 alot. He has
terrible allergies which led to ear infections and URIs all the time. When he was 16 months Early Intervention came and evaluated him and the only area
he lacked in was speech. He qualified for speech but just made it.
He was only about 4 months behind.
William is now 23 months old. He went for
his 2nd team meeting in January 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 thanks to Easter Seals. He
is doing great. He also is very smart. He
knows some numbers, colors, and letters
thanks to school.
William will need to have lip revision, a bone graft, and his nose redone. We
hope that he won't need anymore but thanks to the cleft club and cleft kids
and other sites 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 his pictures. They are very interested in learning about it and I am more then happy to inform them. I think these kids might benefit in the long run for knowing William.
I hope that our experiences can help another family.
Robin
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 to find out he 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 were told by Dr. Stieg that everything was fine. We didn't know at the time that cleft children have a hard time with sucking. We went back on Monday. He was now off the monitors and if he had a good day we could take him. He did and 5 days after he was born he was released.
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 Dr. Frank Stieg. He scared us a little because he is a get down to business doctor. We knew nothing about the surgery except what he told us 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 a.m. I was then sent back to my room to "relax and rest". I had so many feelings. Every feeling in the book but mostly scared. My newborn son of 2 days was taken away from me for a 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 to me I look mad. I wasn't mad I was tired and scared.
They took him at 12:00 and they reassured us it would be fine. We were all alone we had no friends, no family, no other parents who have been through this before with us. We felt very alone. Dr. Stieg came out of surgery at 2:30 very joyful is all I can say. He was very
William was born on March 16, 2000 at Arnold
Palmer Hospital in Orlando FL. He was 12
days early thank God. They had done an ultra-
sound the week before because they were
afraid he would be over 8 lbs. If he had been
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 15 and was in labor
for a good 13 hours before he was delievered
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 married into a family where looks are
everything. 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 took him away for his first real bath.
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 cleft children 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 he was always crying. He had no sucking ability.
Our Very First Featured Family!
February 2002
William Thomas, unilateral cl&p
Born March 16, 2000
Pennsylvania
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He had many problems over the next month. He developed colic, lost weight, and threw up everytime he ate. We did have excellent recovery with 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 then that he would be burning up calories and so I had to time his feedings. After a month of this we finally got into see an OT 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 he was put on solids but still had problems keeping the food down. We didn't know at the time he had reflux disorder. He did still gain weight and he loved his solids.
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This cleftAdvocate page was last updated March 25, 2014
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