Being her voice

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I read a news story recently that frustrated me to no end.  It reminded me how far we have to go to get to real understanding of patient rights and saddened me for this family.  A girl, living with Rett Syndrome, Melody, could be taken away from her parents because of a treatment plan they are insisting on.  I don’t know the specifics about them or their history, but as a dad who would do anything to fight for my own daughter’s comfort, well being and care, the very conversation around this is infuriating.

Terminally ill Melody, 11, could die in agony in foster home as doctors decide to withdraw pain relief against parents’ wishes

We have been in similar spots before.  Maybe not as dramatic, but Rett Syndrome is rare.  The number of doctors who know anything about it is limited.  The number of doctors with up to date information about it is even more limited.  We have taken Maggie to doctors and left, after being thanked by the doctor, for helping them learn about Rett Syndrome (thanks for the waste of time).  We have been told that it’s our fault she started having seizures (what an insane thing to suggest).  We have friends whose daughter was being recommended for scoliosis surgery, but at their insistence, they opted for a brace instead which appears to be helping (why wouldn’t they just listen to the parents from the beginning?).  We have been met with eye rolls and resistance from school officials when we stress that she is capable of learning at an age appropriate level (she is now testing at above grade level so…?).  We have been told that her balance loss was just part of Rett Syndrome, when in retrospect, it’s become clear it was undiagnosed seizures (this felt like negligent malpractice and I think about it every day).  We have warned phlebotomists about the difficulties of drawing blood from Maggie, despite their snickers, only for them to bite their tongues, having to try for a third time to draw blood from poor Maggie’s arm (I hate to be an I told you so).  We have asked doctors about her behavior, and gone to specialists around the country, only to be told that either we were doing all that we could, or there was nothing they could do for her yet (then why did you take the appointment and waste our time?).  We have met with orthotists and explained in great detail exactly the kind of bracing we need and been told that they don’t do custom work, or been given something entirely different.  The point is, we, as her parents, are the experts in Maggie’s care, and most doctors don’t have enough familiarity with Rett Syndrome to actually know what might help.

Perhaps even more surprising is the lack of familiarity with non verbal patients.  Trying to diagnose an issue when the patient can’t tell you where they hurt, or how they are feeling, is very difficult.  But trying to understand a non verbal patient with whom you have no familiarity must be impossible.  We know the look.  Someone will ask Maggie a question and then look to us for her answer.  But we don’t go to the doctor to give answers, we go to get them.

If a doctor doesn’t have answers, and has spent the patient’s entire care looking to the parents for insight, it’s unreasonable to insist on a particular treatment plan if the parents don’t agree. Doctors and healthcare professionals and the health care system need to understand, this needs to be a joint effort. We have fought for Maggie’s care at every step of the way.  If a doctor gives an answer that is clearly misinformed, or a treatment we already know will be ineffective, we don’t accept their word.  We accept that we have to find a new doctor.  Keep in mind there is outdated information about Rett Syndrome saying that it is degenerative (it’s not), most secondary issues are caused by Rett and therefore untreatable as well(they’re not), and hopeless (it’s most definitely not) .

When I go to a new doctor’s office now, I have to prep myself for a lengthy discussion about Rett Syndrome in a way that doesn’t frustrate Maggie who hates when we talk about her in front of her.  I’d like the norm to be, to walk into a doctor’s office and have them more familiar with Rett Syndrome than what is on the wikipedia page.  The amount of times a medical professional has tried to calm my nerves by suggesting he “wasn’t that familiar with it, but read up on Rett Syndrome when he heard we were coming in,” is in double digits.  You can imagine how thankful we actually are for the handful of doctors across the country that do know Rett and are willing to problem solve with you. So when I read a story like Melody’s, I get it.  I get the frustration of dealing with medical professionals who just don’t know enough.  I get the anxiety of knowing what your kid needs and having to fight tooth and nail to get it.  I don’t get a social worker claiming that parents are unfit because of medical care they are requesting for their daughter, but it scares me.  Because some day I’ll yell at a doctor too loudly, in my own abject frustration.  Some day, I will be guilty of pounding on a medical instrument too forcefully to prove a point.  Some day, I’ll do something on Maggie’s behalf that will be taken the wrong way and I’ll have to answer these same questions – about whether I’m doing her harm.  And that won’t diffuse my anger.

We’ve been Maggie’s voice for 7 years and will be for quite some time more.  A doctor has been to school for longer than I have, but he hasn’t studied Rett Syndrome for longer than I have.  He or she may have learned about it, but it’s been our focus for 4 years now – every day, 24 hours a day.  There will be very few medical professionals who know more about Rett Syndrome, there will be none who care more about Maggie’s well being.

2 thoughts on “Being her voice

  • 🙁 You are so right. This ordeal has destroyed my faith in humanity. I don’t have confidence in the system anymore. I pray constantly for a good God to miraculously guide our feet to compassionate people/doctors of His choosing. Thank you for your honesty and for not accepting this reality as somehow “good enough” for these precious children. They are truly making us better people. Both your families are in my prayers.

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