Our story

[JWNJ]

Hello everyone. I recently found this board and have found it to be very helpful. Here is our story....

My husband and I are having our first baby in early February. During our 18 week ultrasound we found out that we are having a girl...and that she has a cleft lip. It was..and has been..really upsetting, especially for me. It has been a whirlwind since then. We were sent to Children's Hospital in Philadelphia for an all day series of tests. What they found was that it involved the lip, gum, and palate, but that it was isolated...that is...it was not related to any syndrome, etc. We recently did 3-D ultrasound and found that the cleft in the lip was not that bad.

My question is for those of you who live in the NY/NJ area. I work at St. Joseph's Regional Medical Center in Paterson...where there is a wonderful craniofacial team...how fortunate. But, there is no plastic surgeon. So, we need a surgeon. Does anyone have experience with Dr. Staffenberg at Montefiore? What were your experiences with other area surgeons?

Thanks in advance for your assistance.

[gregory]

Hi and welcome to the group,

I am sorry to hear about your baby's cleft, but I am glad that it is not related to a syndrome and that it is isolated.

If you did not deal with such a condition before, it is understandable to be upset. Though, I assure you that such conditions are fully restorable, while they become a faded memory.

My son was born with a Pierre Robin Syndrome/Sequence; cleft palate is one of the main characteristics other than micrognathia. As you can see from my son's story (http://www.cleft.org/families/theodoros.htm), he was operated by Dr. William P. Magee, Co-founder of Operation Smile (http://www.operationsmile.org) and parent organization to the Smiles Support Group.

Dr. Magee is one of the strongest advocates of early intervention in the US and the world. His reputation for handling thousands of cleft operations throughout the world using early intervention was reassuring to me and my wife. My son's surgery was thoroughly successful, while the results were a work of art.

My son is now 9 years old and he has nothing to show for all that he went through when he was a baby. As a matter of fact, thanks to early intervention, he remembers nothing.

Unfortunately, I do not know any pediatric plastic surgeons in NY or NJ.
For me an my family, Dr. Magee is a miracle worker; I would like to propose that you contact his office (757-321-3267) at Operation Smile for more details about cleft repair and early intervention.

Regards,
Gregory (9yoB, PRS)