Hello, My name is Jeanne. My husband, Mike, and I have three sons. Sean is 22, Adam is 20 and Kyle is 18. Kyle was born in March 1987, with a unilateral cleft lip and palate.

When my son Kyle was born, my first thoughts were, "Okay, what do I need to know?"

Shortly after birth, Kyle was being taken care of in the nursery, and I was still on the delivery table. I said to my doctor, "Okay, tell me everything I need to know." and she did.  She mentioned surgeries, speech therapy, orthodontics, and as much as she could think of. She had never had a patient with a cleft lip or palate, but she had worked in a hospital during her residency, where many of the cleft palate team of doctors worked.

She told me about the team of professionals who worked in Saginaw Michigan, out of St. Luke's Hospital.  She said that she would set up necessary appointments; for us to see an Oral Surgeon, an Orthodontist, and an ENT (ear, nose and throat) Specialist. We were very lucky, that our doctor was somewhat informed about cleft lip and palate. However, there was no information to be found at the hospital. This motivated us to search, and to find as much information as we could. We supplied some our findings to the hospital. We also gave them our name and phone number, (asking that they call us if this ever happened again) so we can help out a new family that might be facing this dilemma. Since we're in a rural area, cleft lip and palate is not a very common occurrence, but when Kyle was born; it was the second most-common birth defect, next to club foot, with it occurring once in 900 births.

First and foremost, we needed to figure out how to feed Kyle. Feeding is the most important question you have right away! Here is a list of feeding suggestions and words from personal experience:

Kyle did not have good suction.  We were lucky to have a nurse who had worked at Children's Hospital in Detroit. She told us to take the nipple, turn it inside out, and cut an ‘X' in it. This allows the milk to come out easier, and does not allow it to pour out. We found the Playtex Nurser nipple to be best for Kyle. Once we found a nipple he liked, we never looked further.  So stick with what works!

Hold your baby so his head is nearly sitting up. This not only keeps him/her from choking if the milk comes out too fast, but it also keeps him/her very alert while eating. We had to make sure Kyle didn't fall asleep while eating. Babies with clefts tire easily from nursing, because it takes a lot of energy to eat. Make sure your baby is alert and hungry, to increase chance of them drinking an entire bottle. 

Some babies with a cleft palate will get the hang of pulling milk from a nipple, and may have the ability to suck. If your baby does, consider yourself lucky.  Most babies with cleft palate cannot breast feed, but some can! Don't let people discourage you until you try it yourself. You may be able to do both. 

Later, when your child has started eating solid food, (but before Palatoplasty) you may notice food coming out of their nose. This is normal and doesn't hurt the child – it is just annoying. Use a tissue or a Q-tip to occasionally clean the nostrils. Oreo Cookies are real fun!

Your surgeon may ask you to keep your child on a liquid diet during post-surgical times. This is to protect those tiny little stitches, and believe me, you don't want any gaps in the palate once it is surgically closed! Start out with clear liquids: Jell-O, Gatorade, chicken broth, and even 7-UP. You can then, slowly, progress to a liquid diet. Kyle lived on Carnation Instant Breakfast and ice cream for many post-surgical periods.  Remember that formula has all the necessary nutrients. Therefore, if you have to revert to that exclusively, you shouldn't have a problem. You can gradually add food to their diet.  Oatmeal, applesauce, mashed bananas, and toddler baby food work well.  Stay away from chips, and crackers, and cold cereal as long as you can. Believe me, it's not worth it!

Don't eat in front of your child, unless you are eating what he is.

Real ice cream is very good for them, and if that is all they will eat, by all means, give it to them.  You can worry about sugar, fat and calories at another time. Another word of advice: If you have a note from your doctor stating, "Liquid Diet" your child's school must provide it to them. Furthermore, if your note says "Carnation Instant Breakfast and ice cream every day for lunch," then that is what they have to provide!

Kyle had surgery to repair his lip when he was 4 months old. He's undergone palate surgeries (both hard/soft palate), Velopharangeal Flap Surgery, bone grafting in his Alvelor Ridge (gum line) and tubes, 3 times. He had the "flap" surgery when he was 6yrs old and the bone graft when he was in 3rd grade. The bone was harvested from his hip, which was quite sore for several weeks. He was in speech therapy from 18 months until first grade…and of course, Orthodontics. Kyle had a baby tooth removed. The tooth had erupted in an unusual spot in his mouth. The rest were ‘turned' by use of Orthodontics. He started with retainers to move the teeth, (even the baby teeth) and then he had one set of braces. He continues to wear a retainer at night, and probably will for some time. He had 2 Wisdom teeth pulled last January.

Insurance: We had Children's Special Health Care Services, available through our local health department. We qualified financially. This covered any and all things related to the cleft. The program covered many things, not limited to: ear drops, antibiotics, surgeries, doctor visits, tubes, and more. My husband's Blue Cross insurance plan covered anything that was not covered by CSHCS.

Homelife: All of our doctors were in Saginaw, which is 2 hours from us. I wasn't working during Kyle's adolescence.

Current Activity: Kyle is now a college student, attending Ferris State University . He loves Science and Biology. He graduated in the Top 10 of his class at Oscoda High School in June '05. He has many friends, a girlfriend or two, and plays percussion in a rock-n-roll band. His major accomplishment in high school, was being the only person in his class, achieving perfect attendance throughout 4 years of high school!

I'm not saying that we are experts by any means, but I hope that we can answer questions and be of support to MiCleft Network Families!

*Jeanne Hebner continues to support individuals (and families) affected by craniofacial anomalies. She is an active network participant, MiCleft Angel, and organization volunteer. She enjoys going to work everyday...as a school bus driver for 'special' children. Jeanne can be reached at: sable58@yahoo.com