Making Medical Relationships Work When Caring For A Child With A Birth Defect

A child suffering from a birth defect will require a lot of unique medical care, some of it rendered routinely during regular checkups while a fairly larger portion will be rendered by a plethora of specialists. Making medical relationships work when caring for a child with a birth defect is a hurdle many parents find especially hard to weather, usually because they feel that at times the doctor is speaking in a language they simply cannot follow, while at other times there are so many physicians involved in the care of the child that a general consensus and set of instructions is not readily apparent.

Sadly, this frequently leads to miscommunication but also to a lack of information since physicians and other health care providers are obviously the horse’s mouths when it comes to prognosis and problem solving with respect to your child’s condition. Add to this the fact that today’s health care system all but forces physicians to routinely spread themselves so thinly that office visits rarely last more than three to five minutes, the conditions for a failed parent-physician relationship are ripe.

Here are some simple ways to make the most of the time you have with the doctor:

1. Do not waste time by telling her or him what to do. While information about your child’s birth defect is readily available online, it is a sad state of affairs that a majority of this information is misleading, only marginally transferable to your child’s condition, and in some cases entirely incorrect. Basing your idea of a proper treatment plan on this kind of information is not only dangerous but also foolish. Instead, educate yourself and formulate questions to ask.

2. Write down your questions and take notes when you receive answers. After each visit, request a copy of the notes the doctor took during the visit.

3. Learn the medical lingo to the extent necessary. Don’t refer to your child’s malformed limb as “that stump” or the birthmark as “the thingy.” If it has a name, use it.

4. If you are seeing the doctor for anything other than a routine visit, document the reasons for your visit. Include the time you noticed the condition first, the severity, and the presentation. Sometimes it is okay to call the office and speak to a nurse practitioner to get a reality check if you really need to come in. This is especially true with infants and younger children.

5. Making medical relationships work when caring for a child with a birth defect requires trust. Do not maintain a professional relationship with a doctor whom you do not trust completely. Even though this might be easier said than done, especially if it means that changing doctors will require not only a records transfer to a different office but also a major hoop jumping session with your insurance carrier, remember that this relationship is for the long haul and not just a short term or one time visit to get a second opinion on something.

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