Friday, January 23, 2009

Doctor God?


Last August, I wrote about Ashley and her visit to the dentist. I asked the dentist about braces during the visit, and he indicated that it was not worth pursuing because of Ashley’s medical issues. He was making a judgment call – believing that Ashley would not live long enough to reap the benefits of braces. I feel that he was also thinking, “With all her disabilities, why is this mom worrying about straight teeth? No one will probably care.”

I think those of you who read my earlier post had no doubts how I felt about that dentist. Unfortunately, since that time, I have heard similar stories from other parents of children with significant disabilities and/or medical issues.

First there was the mom whose eye doctor didn’t want to discuss removal of her 7 year old child’s cataracts. The child did have significant medical issues and was also significantly intellectually disabled, but he was also happy and loving, communicative in his own way, and very driven to experience all life had to offer. The eye doctor told the mom that it wouldn’t make much difference for the child to be able to see better.

Then, a doctor for a 10 year old girl scoffed at the mention of orthopedic surgery, surgery that would help straighten the young girl’s spine. Like the 7 year old above, the girl has significant medical issues – is tube fed, has a trach, and is not mobile. Many of her doctors couch their treatment suggestions with the term ‘life expectancy’, but this child is defying the odds, and with the dedication and support of her mother, she is proving her doctors wrong.

But we have all met doctors who don’t like to be wrong.

I’m curious – is it unusual that I have heard these three stories? Have other parents experienced something similar? Do you have a story of a doctor who dismisses what you consider appropriate treatment for your child based on your child’s disabilities or expected life span? If so, I would appreciate hearing it…

6 comments:

Amazing_Grace said...

As a past teacher of the blind and multihandicapped in 2 states, I have heard of such stories that have been told to me by the parents of my students. I would just tell them that the doctor's do not have any idea what it is like having a child with special needs and that you as a parent want to do the best for them. :)

Lynnette said...

Just read your blog over lunch . . . I'm sure there are lots of stories of doctors discouraging parents from certain treatments unfortunately. It reminded me of a situation that happened to us regarding Brooke's vision. I took Brooke to an eye doc as a baby and again at 2 years or so because of the potential for CMV to harm her eyes. He told me she was fine and showed no signs of CMV damage. That was all he said.

At age 5 I took her to a different ophthalmologist because of the problem with her pupils being dilated sporadically. That doctor said her pupil problem was neurological and then asked me if I knew she was visually impaired. I was shocked since I had not been told and had seen no indication of it. I went back to the first doc and requested a copy of his report and discovered that he diagnosed her problem when he saw her but did not inform me. My guess is that he looked at her and decided that she would not benefit from glasses because she was "too disabled".

little.birdy said...

I think those medical professionals should be reported to their professional ethics board for refusing to give treatment and, in Lynette's case, to disclose the information that is entitled to her by law. I don't know how other organizations handle it, but if a speech-language pathologist is reported to ASHA (the organization that certifies SLPs to practice) for a serious enough ethical violation, that SLP can have his or her license to practice revoked.

Stacy said...

I work in early intervention and one of my kiddos is a little girl who has a TBI from oxygen deprivation. She has hip dysplasia and the doctor said it wasn't worth putting her through the stress of surgery to repair it when she "would probably never walk." She's 18 months old. They have NO idea what she can or will do!

Ashley's Mom said...

Stacy, you are so right. Doctors told me when I adopted Ashley (who was two years old at the time) that she would never walk, always need to be fed through a G-tube, would never be able to talk or communicate, and should be institutionalized. Well, Ashley got in trouble in the 4th grade for running in the halls at school - she had pizza (by mouth) for dinner last night - she continually gets in trouble for signing that her teacher is a b*tch - and Tuesday night she will be cheering at a school basketball game.

Doctors, imho, cannot and should not make predictions when a child is still so young....

Connor's Mom said...

I'm sorry to tell you that this isn't just an isolated thing. We have a son with multiple special needs and we've run into this problem on several occasions. My son is the most loving, gentle person I know. I think that some doctors get so wrapped up in the technical aspects of their professions that they forget the human, compassionate side of things. We had one young resident who had been very nice up to that point take a look at our son's MRI scan and say-- there's sure a lot of empty space up there! I gritted my teeth, took it as a teaching opportunity for him and gently let him know that he should never say something so inappropriate to a parent. He was mortified, apoligized profusely, and will hopefully be a much more compassionate doctor in the future.

Every once in a while we come across a situation that's unexcusible. The nature of my son Connor's heart defects are something that doctors cannot repair. If his heart were to start having problems because of these defects, the only option would be a heart transplant. One of his doctors at his first hospital told us that were Connor to need one, he would not recommend our son as there were other children who could "function better" and would "Get more use out of it." I pointed out that the reason for my son's shortened lifespan prognosis was his heart, and he shrugged his shoulders and said he still wouldn't recommend it. The implication was that these children who had no special needs other than heart issues were somehow better than my son, who was in the doctor's mind defective and therefore should probably die anyway. I was furious.

Luckily, the issue of having a heart transplant has not (and hopefully will never) come up for our son. If that day should come, however, I will fight with every ounce of my being to allow him to have the same opportunities that other children have. I'm not asking for any special treatment for him-- just a spot on the waiting list.

~Jess