Monday, August 15, 2011

Doctors treating special needs parents with respect


Last week, Bean went for his anesthesiology consult prior to dental surgery scheduled in early September - but we're on the cancellation list and hoping for an opening sooner because his teeth are getting worse and worse.

This appointment was important because individuals with Williams syndrome (WS) are considered at high risk for anesthesiology complications due most often to heart problems and it is critical to develop a plan with the anesthesiologist. I wrote about common heart problems associated with WS here. Bean has the characteristic supravalvular aortic stenosis (SVAS) and hypertension though both are considered mild at this point, thank goodness.

So, off to the hospital we went.

Baby J stayed home with his father and Bean and I got to check out the same-day surgery unit.

I knew going in that we would not necessarily be meeting the doctor that will be administering his anesthesia and monitoring him on the day of the surgery because that is not decided until the day of, but the doctor we would see that day would write a plan with me and attach it to his file for surgery. I was not expecting, however, to only have the opportunity to meet with a resident rather than an attending as I had been hoping.

After a short wait, the resident met with us. He was very friendly and easily connected with Bean and he assured me that he would discuss Bean's case with his attending before finalizing a plan with me. That was ok with me. I'm ok with a teaching hospital, I really am. But still, I want the best, most educated and experienced for my child.

He was not familiar with WS but was willing to learn. He sought to reassure me that Bean would be just fine and he was not at all concerned with complications because his heart problems are considered mild at this point. This is where I had the problem.

Don't get me wrong. I am grateful that Bean's issues are considered mild but the doctors need to take his case seriously. SVAS is a progressive condition and it is possible that it has changed - even slightly - since his last echo. And anesthesia is always risky - especially for a child with a complex medical history.

I understand that the resident was likely just trying to comfort me but I am not the type of parent that is comforted by having my concerns minimized. I mean really, does that type of parent actually exist? Instead, I want the doctor to acknowledge the risks - specifically cardiac arrest and malignant hyperthermia among others - tell me what s/he will do to prevent these risks and what the plan of action will be should something go wrong. 

Treating me with respect and acknowledging that I have at least some knowledge about my child's circumstances is THE way to gain my trust. And Knowing that my child is in capable hands that knows what s/he is dealing with and knows how to handle the worst case scenerio is what comforts me.

Because this is a teaching hospital and because the resident is there to learn, I let him know what I was thinking - in a kind, respectful tone, of course. He was receptive and then the real conversation begun. We discussed the risks. I shared research with him that he was not aware of. He explained process and precautions to me. And he did get the stamp of approval from his attending. Bean will be treated as high risk. He will have the full attention of an attending that has an understanding of his unique health circumstances. He will get the best care possible.

Ultimately, I left feeling a lot better than I did at the start of the appointment because the resident (eventually) treated me with respect (after a receiving a gentle nudge from me.)

5 comments:

  1. Good for you! So glad the resident listened. I've had my fair share of run-ins with residents. I'd say a majority listen to me and my knowledge of my daughter, but there have been a couple who ignored me, even after prompting. Needless to say, their attendings heard a thing or two about them. I hope the dental surgery goes complication-free!

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  2. Awe, thanks! It's so hard to get their attention sometimes! But we do what we must :)

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  3. So glad it worked out like it did!

    We had 3 out of 5 pediatricians tell us to feed our kid (because she wasn't gaining weight). We tried, we told them. We think she has an ear infection.

    Neither one of them would look in her ears because children with Down syndrome have 'small ear canals and they wouldn't be able to see it anyway'.

    We went to the newest ped (who had just started the past week. First thing he did was look in her ears (guess what? normal sized ear canals!) and a DOUBLE EAR INFECTION.

    He has been our ped for almost 4 years now, for both kids. And we recommend him to anyone who has kids in our area. He is so willing to learn about Down syndrome and the newest research and studies.

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  4. Ugh! It's infuriating when doctors don't take us seriously! And to think that a child is in pain as a result...

    Our ped is fantastic - as are most of our other specialists. Our first GI, though, was just a nightmare. Fortunately, we found someone much better!

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  5. I'm so glad you spoke up! Way to go, Mama!

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