Fronto Nasal Dysplasia and incomplete cleft lip...help

[Sadie]

My daughter is needing repair for incomplete cleft lip and fronto nasal dysplasia, I am having problems finding anyone that has seen or heard of a similar case to hers. Her surgeon admits that he has never done a repair like hers and he is the top specialist in our state. I am especially interested in information with regards to the nose repair, she has a small nostrils and a very wide septum (? or so I call it, though I know that is not the technical word for the area in between the nostrils). Any help would be greatly appreciated, especially anwhere that might have before/after pictures!!


Sadie

[Anonymous]

Hi Sadie,
What state do you live in? There is a doctor in Michigan, he is a cranio-facial surgeon. He travels the world doing cranio-facial surgeries. His own son was adopted from South America. This child had no nose. He had been bitten by a sand fly and got a parasitic disease that just ate away at his facial tissue. He had done over 70 surgeries on him alone! I do believe he would know about this and could maybe give you insite on a surgeon close to you that could help. His name is Ian Jackson and he works out of Providence Hospital in Southfield MI. I don't have a number for you but maybe you could call information and talk to his secretary. Good luck and congratulations for being such a great advocate for your child!!!
Carol

[Linda]

Hi Sadie. Not sure which state you are from... I live in California and have found wonderful cranialfacial doctors at Childrens Hospital in Los Angeles and UCLA medical center. They have done a FANTASTIC job of correcting my daughters cleft lip and palate and repairing her nose that was deformed due to the cleft. She has zero speech problems and most people dont know she was born with a cleft. The scars are almost invisible. Good luck and God bless. Having a special needs child is not easy but it is very rewarding!

[Sadie]

Thank you for your suggestions. I am much closer to Michigan than California, so I will check into that doctor!! Thanks for the replys and the encouragement!


Sadie

[bluenose1@home.com]

Hi, try going to the Erlanger Clinic online <a href="http://www.erlanger.org/craniofacial/book.html">http://www.erlanger.org/craniofacial/book.html</a> and have a look at some of their stuff. Also I have a bunch of research on recent changes in craniofacial surgery. We are surgery veterans here so I stay sort of up to date. There have been some important advances in the past few years and more technicques and materials are being improved all the time. The american Cleft Palte Association publishes a document about the number of surgeries of a certain type that a doctor must perform each year in order to call themselves a craniofacial team. I can't recall the name of the booklet, but I know parents who have gone out of their network to seek better care for their kids and that booklet has helped them convince their insurance companies. Hope this helps. If I can answer any other questions I will. Good luck to you and your little girl. How old is she? Best wishes. Pat

[Sadie]

thank you for your response Pat, I will visit that site and also will check into the booklet, I appreciate any info you all can provide me.


My daughter is now 13 months old, born 3.5 months prematurely. She has multiple medical problems so we are continually trying to "balance" all those things.


Thanks again!


Sadie

[Pat]

Hi Sadie, please write me privately and I will give you a bunch more information. I have a web page also and I will give you the url when you write me privately. I hope your little girl is doing well. I would like to know where you live and more about your daughter. Could you send me some pics over the net? Looking forward to hearing from you.




bluenose1@home.com

[lorabeas]

How is your daughter?
Please write me back if you are still in group regarding frontonasal dysplasia!!!!

My daughter has Frontonasal Dysplasia, with midline cleft lip and palate and other anomalies.

Lora, mom to Meadow Grayce, 2 yrs, AL
lorabeas@hotmail.com