Cleft Palate Page


I met Matthew on his Birth-Day". Matt's parents were very young when he was born. Mom-Melissa was just 18 and Dad-James was 17. When my husband, Jim and I found out our teenage son was to become a father, we were naturally upset. However, since we felt that the other "options" were not right for our family we began to prepare for the arrival of a child. The first time it felt real was during Melissa's first Sonogram. I now encourage all grandparents to try to go with the expectant mother to witness this miracle. Just thinking about seeing his little heart-beat is such a joyous memory.

During the sonogram, at about 3-4 months gestation, the cleft was not picked up. Two more sonograms were done and although we were told to think "footballs" instead of lace we had no idea that Matt was not developing quite right. Because James was under-age at the time of his son's birth, I went into the delivery room with him. Also present was Melissa's Aunt, Kathy. The labor was long but the delivery was going smoothly. As Matthew was making his arrival, I noticed a shadow on his face. It wasn't a shadow, it was his cleft lip showing. As the doctor noticed the cleft, there was a hasty delivery and a pediatric specialist was called in.
The staff tried to console us, but we were in shock. We just had not expected this. (I guess no one ever does) From the moment I saw Matt, I knew that I loved him more than I thought possible. I was scared, tired and frightened that there might be more wrong with him. I knew a child when I was very young who had a cleft. All I could remember was how nasal his voice was and that we could barely understand him.
The next day Matt met an assortment of family, all having the same reaction that I did. He was perfect and we loved him!!! That is not to say that all went smoothly. The hospital was not very knowledgeable in Cleft-Palate Babies. By the time Matt was three days old he had lost over a pound (He was now under 5 pounds) and had dehydrated. He was put in the hospital and we were taught how to feed him with a tube. I DON'T THINK SO....... As luck would have it, I had heard of a Face and Bone Surgeon who worked at Children's Hospital in Oakland. I called them and found Ginny. Ginny is the Cranio-facial Nurse Specialist at Children's hospital. When I called her and told her what Kaiser was doing she took care of everything. Thanks to Ginny we were sent immediately to Children's hospital where we found experts who taught how to use special squeeze bottles to feed Matt. No Tubes!!!
Within a few days we were experts at feeding and taking care of our baby. His mother used a special machine to pump her milk and then we took turns feeding him. As Matt began to get a little older, we really enjoyed his special smiles.

When Matt was two months old, we had our first all day appointment in the Cranial-Facial Department. We were there with about six other families. They all had cleft babies too. By the end of the day, even though each family was different we had all bonded together. Five years later, I still respect these people and wish I had more time for contact with them. These other families made it a point to show up when Matt had his surgery, as I did when their kids had theirs.

The first surgery was scheduled when Matt was 4 months old. He was so little, his parents were so brave. I couldn't bear to watch him be handed over to the surgeon. But I was there, along with most of Melissa's family and a good portion of mine. The surgery went smooth, Dr B. Toft stretched the lip, gave him a nostril and the ENT put tubes in his ears. It was then that we discovered that Matt had a temporary hearing loss. At almost six years-old, we still keep tubes in his ears. As time went on, the cleft palate part of Matt did not seem important any more. The surgeries were successful and with each revision it became apparent to us that we were raising a cheerful, self assured little boy.
The truth is by the time Matthew was nine months old and had his cleft Palate Surgery, we forgot to take pictures. We just focused on everyday life. After the inside Cleft work, Matt had to drink everything, including formula from a cup. No spoon, bottles or tippy cups. We blended everything. The only drawback from this was that he still has a hard time with some foods solely based on their texture. He gladly gave up his bottle at this time too.
Matt's New Tooth: Matt has sprowted a tooth on the roof of his mouth, in the center of his cleft. The panicked Grandma (me) called Children's Hospital Immediately, emailed pictures and worried. The Oral Surgeon, said....Brush it and leave it alone.

Matthew was 6 on November 20, 1999. He started his orthodonic work was to have another surgery within the next year or so. Matt started first grade and did quite well for the youngest in the class. There was a period of adjustment, like when he complained about the lady that yells at him in the play-yard. I called the school to inquire about his complaint. The "lady" is the PE teacher and she only yells when he wanders off and doesn't participate. Ok Matt, let's talk about PE... He is a good reader, although he has a little bit of small motor skill concerns but that may be genetic. This grandma's handwriting is still not legible and neither is his Dad's. Matthew's orthodontist, Dr. Johnson, has put a device in Matt mouth that will spread apart his teeth to get ready for his next surgery. It is a permanent piece that fits on the roof of his mouth. This was not walk in the park getting the fitting done. But, once we explained to Matt what and how things were to be done. We managed it without too much stress. Pictures of Matt's Device
Matthew is now 7-1/2 years old and we are trying the orthodontist again. The first time was way more trouble than it was worth. This time a little more than a year older, it is going much smoother. Matt seems to understand what he can eat and how to keep it clean. We carry toothpicks wherever we go to help him when food lodges between his palate and his device. Matt and his Sister, Nadia, We also decided to keep Matt back and redo first grade. He was on grade level for all subjects but his maturity was the biggest factor. He fits in with the other kids very nicely this year, although he still is not doing well with his PE teacher. We will be seeing the Surgeon this summer to see where we are as far as planning for his next surgeries. coloring Easter Eggs We try to lead a normal life and not let the Cleft Palate define who Matt is. When kids tease him about his crooked smile, he explains in his own words what it is and that it is no big deal. We have showed him and talked about famous adults who have had a cleft. Right now his favorite "clefty" is Cheech. My favorite "clefty" is my own MATTHEW!
To E-Mail Debby or Matt: daily94538@home.com to go home
To find out more information about Cleft Palates, visit Wide-Smiles


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