How to Choose a Health Care Provider

 

 

 

Dear BWS  affected families:

 

In the interest of helping individuals with BWS and their families and concerned others, we feel compelled to share the following information:

 

  1. Dr. Marsh is NOT the only surgeon who can successfully perform tongue reduction for BWS. He has never made this statement. Any person who has contacted him and asked for a referral to a local surgeon has received one of the following four responses from Dr. Marsh:
    1. I personally know Dr. X, who is in your area, and know that Dr. X does BWS tongue reductions. Dr. X’s contact information is…;
    2. I personally know Dr. Y, who is in your area, but do not know what Dr. Y’s experience with BWS tongue reductions is. I suggest you contact Dr. Y and inquire about his/her experience;
    3. I do not personally know a surgeon who does BWS tongue reductions in your area but I do know Dr. Z who I can ask for a referral to such a surgeon for you, if you wish;
    4. Unfortunately I do not know any surgeons in your area to ask about BWS tongue reductions. The closest surgeon I do know is at …, his/her name and contact information are …

Dr. Marsh could not evaluate and perform surgery on all the BWS individuals in the United States, even if he wished to, let alone in the world. He has a very busy reconstructive surgical practice based on defects of the face and skull. While he does perform many tongue reductions for BWS, they comprise a minority of his practice. Dr. Marsh’s comments are based on personal examination of 130 individuals with BWS on 71 of whom he has performed tongue reductions, using the same technique, over the past 18 years. Dr. Marsh lectures both in the United States and internationally about his experience with tongue reduction in BWS to educate other health care providers so that they can provide service similar to that provided at St. Louis Children’s Hospital.

  1. Tongue reduction surgery is NOT a trivial operation. Since poorly performed surgery can cause irreversible damage to the ability of the tongue to move and to feel/taste, require a tracheotomy, and/or require additional surgery, the surgeon and the hospital should be chosen carefully – as for any operation. Complications with tongue reduction primarily occur because of what happens within the operating room and are directly related to the surgery performed. While at St Louis Children’s Hospital, we do observe tongue reduction patients overnight in a Pediatric Intensive Care Unit; this is a precaution and of itself does not prevent complications.

  2. Ask the surgeon about his/her experience with BWS tongue reduction. We would not let anyone operate, or perform any other invasive or potentially dangerous procedure on our self or a loved one, without a frank conversation about that person’s experience with the planned procedure meanings numbers of operations, how frequently he/she performs the operation, positive and negative outcome results, and the opportunity of talking to several patients/families who have undergone the operation by that surgeon. This is NOT about BWS or tongue surgery; it is the way to pick a health care professional for any health problem.

  3. Our sole purpose in serving as medical consultants to the Beckwith-Wiedemann Family Forum is to provide current INFORMATION about the diagnosis, treatment and research of BWS.  Such information is informational only and does not constitute medical care and does NOT replace the need for in-person consultation with health care professionals familiar with BWS before accepting or rejecting any aspect of BWS care.

 

Bruce Beckwith, M.D.

Michael R. DeBaun, M.D., M.P.H.

Andrew Feinberg, M.D., M.P.H.

Jeffrey L. Marsh, M.D.
 
Getting the appropriate type of evaluation for your child regarding craniofacial manifestations of BWS:
The craniofacial manifestations (macroglossia, cleft palate, progressive dentoskeletal deformity) of BWS can affect an individual's ability to breathe, eat, speak and hear as well as psychosocial adjustment. It is well accepted that the appropriate form of evaluation for individuals with craniofacial deformities is through a multidisciplinary craniofacial team. This is because no single health care provider has sufficient expertise in all of the areas that might be affected by the syndrome to provide adequate evaluation as well as recommendation and provision of contemporary treatment. While such evaluations can be obtained by individual visits to a craniofacial surgeon, an otolaryngologist, a speech/language pathologist, an audiologist, a feeding specialist, a children's dentist, an orthodontist, a geneticist, and a psychologist, this is not efficient with respect to either time or cost. The advantage of a craniofacial team evaluation is an integrated one-step evaluation that minimizes cost in time and money for both the family and health care funder and maximizes benefit for the affected individual. - Jeffrey L. Marsh, MD

 

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web master:

Disclaimer: All information on this site, except for that from the doctors and researchers, is given by volunteers and parents. The information given is non-professional advice only and is not meant to replace the medical expertise of your doctor. The creators of this web site do not censor or edit tips submitted and are not responsible for any errors or misinformation. Please consult your physician for more information on how best to treat your child.

this page last modified: 08/04/2007