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Helping Children with Rare Conditions Beat the Odds

Having been at Montefiore for almost 30 years, I have seen my share of complex, intriguing and heartbreaking patient cases. As a pediatric neurosurgeon, I have treated children from around the world with conditions so rare that their own families have rejected them. Thankfully, this isn't often the case, but it does make our job that much more rewarding when we can help the child and the family overcome the medical problem and the associated cultural stigma that can come along with it.

Over the years, our craniofacial team has had to learn a great deal about various cultures and religions to be able to deal with the unique cases. Since our successful separation of twins joined at the head was carried out by our team nearly ten years ago, we have consulted on 14 more cases and been involved in the separation of three more sets of twins around the world; two in the United Kingdom and one in Australia.

We are currently involved with another set of twins in the Middle East who come from a tribe that lives in the desert collecting nuts, dates and wood. Because of the conjoining at the heads, these children are, sadly, viewed unsympathetically by their extended families and can't be taken back to their home unless successfully separated.

My passion for helping children with rare and complicated medical conditions has remained steadfast since I first came to Montefiore in the late 1980s. Not only am I proud of our surgical outcomes (less than five percent of our patients need to come back to us for reoperations), but I'm also extremely proud of the successes our patients make in their owns lives, despite the adversities.

One of my patients, who has been under my care for all of her 22 years, had such a unique and multifaceted illness that the hospital where she was born had no idea what advice to give her parents. By chance, her mother learned that I was working on a very complicated case and got in touch to see if I could help them. We have been through 15 surgeries in just over two decades and not only is this patient a bright, bubbly and happy person, she also is highly accomplished, having recently completed her master's degree in accounting.

Helping children beat the odds is a rewarding and fulfilling experience. Our team has earned an international reputation for our work and we are regularly asked to consult on cases, present lectures and host workshops. Our goal is to improve the medical outcomes for the children with complex needs so that they can go on to have successful, happy lives.

We're proud of what we've accomplished so far and we have a lot more work still to do.

James T. Goodrich, MD, PhD, DSc (Hon) is Director, Division of Pediatric Neurosurgery Leo Davidoff Department of Neurological Surgery at The Children's Hospital at Montefiore and Professor of Clinical Neurosurgery, Pediatrics, Plastic and Reconstructive Surgery at Albert Einstein College of Medicine.

Posted by blogmoderator on 10/30/2013 at 1:59 PM Add Comment