Several things have happened over the past months that I have
not addressed because they were too raw or too unbelievable. I wanted to think
they were isolated incidents; or perhaps examples of extreme bad manners or lack
of sensitivity or respect on the part of individuals. But they were not.
I have
to face facts. Maggie is a problem to the system and the system does not mind
letting me know that.
This was summed up best by an inelegant presentation I went
to regarding transitioning care from the pediatric service to adult care.
Obviously this is an issue that interests me as Maggie approaches her 18th
birthday. The individual was speaking to a group of parents – and he KNEW he
was speaking to a group of parents. As he started his presentation he spoke of
the disjointed way transition issues are handled now and noted:
“It’s problematic because these children are living longer.”
My head snapped up. I had been looking at his handout and
thought I heard him wrong. Another mom at the table quickly called him on the
remark. She said, “it is NOT problematic, it is wonderful and amazing and you
are talking about OUR children.” He was unfazed by the correction.
Bending as far as I can to give him the benefit of the doubt,
I believe he was trying to say there is nothing formal in place because medical
advances outpace the infrastructure and patients (like Maggie) survive today
where they didn’t even 10 years ago. With
that extremely generous interpretation I have to agree with him. But I also believe
he spoke the truth. It is problematic for the system that these children
survive and the fact that a representative would say that to a group of parent
demonstrates the callousness of the system.
I spoke up from my end of the table because my daughter is
the oldest and perhaps most complicated (or in the eyes of the system “most expensive
and most problematic”). I told the group that I have witnessed the shift first
hand. While doctors used to marvel at Maggie’s history and her charm and
intelligence, I now get lectures about quality of life*, and not in a good way.
In denying to undertake a surgical procedure* that Maggie
needs, the surgeon said to me,
“you didn’t
expect her to live forever, did you?”
Well, no, I suppose I didn’t, but (demanding parent that I am) I do expect her
to be given every chance to live as long as she can.
Maggie has become a burden
to the very institution that saved her life over and over and over again. Medical technology and advance have been able to save the
lives of these children, but cannot make them function as others do. Still,
Maggie functions very well. She is
living the life they saved. Instead of patting themselves on the back as they
should, the system is turning its back on her. Talk about problematic.
To say this makes me sad is a wild understatement.
*The concept of “Quality of life” deserves it own post and
not ALL doctors or institutions feel this way. My amazing pediatrician does not
and arranged a second opinion. Maggie is having surgery next Friday. More about
that to follow as well.
I am so sorry that you had to witness first hand man's inhumanity to man.
ReplyDeleteI wait with great anticipation your next post. These are important issues -- ones that many people should hear. There is now a national institution devoted to transition issues for children with special healthcare needs. We're going to hear a lot more about it and them. I hope and wish that you would be a big part of it (and I hope and wish that Maggie will be a spokesperson for old age transition when that happens, too).
ReplyDeletePeople who say things like “It’s problematic because these children are living longer” Should be slapped in the face. It is amazing that science has provided us with ways to make all kinds advances.
ReplyDeleteAnd I think that people should not judge someone else's quality of life. Maggie (to me) is a beautiful and happy young lady who has so much love surrounding her. And after all, Love is all you need.
My almost 21 year old daughter has outlived medical predictions over and over. She has 9 specialists, and as we transition one by one to adult care, we are watching the quality of her medical care become abyssmal. She will be one of the first to transition from the pediatric home ventilator clinic at our medical center to the new adult clinic. I literally shake when I think about this, due to the horrendous things that have happened due to transitions for primary care, dentistry and neurology. I often get the impression from adult world doctors that they want nothing to do with her and cannot even imagine her life as having any value. Since shortly after going on life support at the age of 15, my daughter has had 8 hours of nursing a day, which we use at night so we can sleep. The day she turns 21, she ages out of that program and we lose the nursing. I pray every day that we will be able to somehow meet her needs as we get less and less help. I also pray to live one minute longer than she does, as I know no one else would care well for her. I think Maggie is beautiful and her life is of great value. The world is a better place because she is here.
ReplyDelete