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Thread: Amelia's Case at Children's Hospital of Philadelphia and some family news too.

  1. #1
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    Default Amelia's Case at Children's Hospital of Philadelphia and some family news too.

    Here is my latest blog post:

    The Ethics of Amelia's Transplant Story
    I've been taking a break from blogging recently. Every so often, I begin to feel brittle and sore from the jostling of everyday life - I feel as if someone has removed the skin from my body. On the outside is flesh, nerve endings, sinew and muscle. If a dog pants near my leg, it hurts. I flinch if I brush by the kitchen counter. I think it's all the change in our family life, along with Christmas. And then there were the events of this week.

    Last weekend, we were asleep at 12:30am when the telephone rang. It was Nick's nurse who reported that a beeping sound was issuing from his implanted pain pump. She had googled the pump and found that this particular sound indicates a 'critical alarm' - either the pump is dangerously low in medication or it's malfunctioned for some other reason. Either way, it means a trip to the Emergency Room. So, we spent the night there waiting while the doctors tried unsuccessfully to locate any information on the pump and what to do about this odd young man and his mysterious pump. In the morning, our own doctor came and refilled the pump with some medication to carry us over till Monday when a proper refill could be done. Medication errors happen and we are fortunate that they are very rare. All's well that ends well.

    Fast forward to Thursday. When I arrived to visit Nicholas, I noticed in his chart a note about a swelling under his right arm. I lifted Nick's shirt and sure enough, there was a swollen ridge, red, hot and sore to the touch. The doctor had been called and when he arrived later (yes, our amazing GP does house calls for Nick!), he lanced the thing and dressed it. I felt so badly for poor Nick. But although he shouted and cursed during the procedure (fair enough!), he smiled and asked for a new playstation game when the whole thing was over. That's my boy - he's a great entrepreneur.

    I feel recovered enough today to write down some thoughts about an internet story that is making the blood boil of every parent in the child neurology internet fora. A little girl called Amelia was turned down for a kidney transplant by physicians at the Children's Hospital of Philadelphia because she has a developmental delay. Apparently her quality of life came into question and the ethics department of the hospital could not sanction prolonging the life of someone so apparently diminished. A quick reading of my last post on this blog will tell you that I and others have recognized this pernicious trend in medical professionals to limit the treatment options for those with cognitive impairments and it's a trend I think is very, very dangerous. One comment on Amelia's family blog about the whole mess warned "this is the beginning of the death panels". I don't agree. This has nothing to do with such simple notions of widespread limits on treatment due to fiscal belt tightening. No, this is an issue to do with disability, particularly cognitive disability. There is a current trend in the medical profession and amongst bioethicists to downgrade the worth of a life lived with cognitive impairments. And those prejudices are playing out in transplant committees as evidenced by Amelia's story.

    I will put my skin back on and start writing about this. Today.
    You can always read my blog at
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog:

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna & Nicholas))))))

    Your description of feeling raw and skinless is incredibly accurate. Stressed, nerves on edge, and sometimes even the gentlest sound seems like screaming in your ear. I know it and live it almost every day.

    You've had quite an upheaval. You didn't just move, you changed countries. And though you returned "home," both Nick and Natalie are out of the nest. Your husband retired. Things are completely different. No wonder you've been feeling worn and torn.

    I'm so sorry that you had to trek to the ER in the middle of the night to fill Nick's pump. I'm hoping that this episode helped to get the hospital folks on board to know what to do in the future, should this happen to Nick, or any other patient. Is there a way to prevent this from recurring for Nick? A way to calculate when the pump is getting low or needs a refill?

    Ouchie! Poor Nick! That growth under his arm must have been uncomfortable. Did the doctor tell you what it was? A boil?
    I'm praying for rapid healing and nothing untoward as the cause of the growth.

    And did Nick get his new Playstation game? ;)

    He's a trooper, that Nicholas. All of our CN children are amazing troopers. Smiling through it all. Amazing.

    Before I commented on Amelia's case, I wanted a little more information. I found this USA Today article:

    And here is the hospital's Facebook page, with their vague reassurances that they don't automatically disqualify children on the basis of intellectual or physical disability:

    From what I can gather, the parents are offering a family donation of a kidney for Amelia, not asking for a stranger donor kidney. If the argument is that donated organs are sparse, so they have to be doled out to the candidates with the best chance of accepting the donated organ and living for a specified number of years after the transplant, then the family has countered that with their offer to donate from a living relative.

    However, the doctor who denied the transplant, according to Amelia's mom, cited "quality of life," as an obstacle. And the social worker wondered who would administer Amelia's medications in 30 years.

    "Quality of Life" is highly subjective and not necessarily assessable through science or sociology. What constitutes quality of life to one individual may not apply to another individual. And, note that it is always the able bodied people, who decide what comprises a quality life. Yet, they are not in a position to do so, because they haven't had to live with a disabling condition.

    People who declare,"I couldn't live like that," should not cast aspersions on those, who can and do "live like that."

    On this day, when we celebrate the life and legacy of Dr. Martin Luther King, Jr., we should all remember his message that we are here for one thing: Love. To give love and to receive love. As one whole community of humanity.

    And, when you have that, when you have L O V E in your life, and you share Love with others, that is when you achieve a true quality in your life.

    Quality of life has less to do with what we don't have and more to do with what we do have.

    But these realities are often overlooked by the medical and social service professionals, ethicists, and elected officials. And they are looking at the bottom line, because everything in this world is about M O N E Y. Everything.

    Amelia has an identified condition, which likely has a life span attached to it. My sons are undiagnosed, but that didn't stop medical and social services professionals from telling me not to expect my boys to live beyond the age of: 2, 5, 10, 13, 18, 21, etc. up to the present day. People defy the odds against them every day. But they have to be given a chance to defy those odds in the first place.

    To the social worker's query about who will administer Amelia's meds when she's in her 30's, my response would be, "Wouldn't it be glorious if Amelia's kidney allowed her to live to be in her 30's? Or what if she lived to be 20? Or even 10? Isn't Amelia entitled to that opportunity?"

    Who will take care of Amelia when she's in her 30's is a general question, isn't it? Her parents will have to plan for her future care, and whoever those persons are taking care of her will be responsible for her medication administration. Just as you have done for Nicholas, and every parent of a child with special needs must do. This social worker's concern is disingenuous.

    If Amelia's medical team presented solid reasons why medically Amelia isn't a good candidate for a transplant, then that would be worthy of consideration, of course. For example, if she is too fragile to survive the surgery, or if her condition would affect her body's acceptance of the kidney, or if she has a bleeding disorder, etc. Amelia's parents must be apprised of all medical obstacles to the transplantation, not left feeling that their daughter has no value, because of her condition.

    While Jon has never been denied treatment and is certainly never booted out of the hospital too soon, our experience last year was eye-opening. The urologists definitely viewed Jon as an end-of-life patient with a low quality of life, when they did not recommend any treatments or surgery for Jon, making those options sound horrendous for Jon. We would not choose to put Jon through any torment like that, so we choose to live and deal with what he has as best that we can.

    We know the eventual outcome. Jon isn't going to live to be 80 years old. We don't expect that. We just want him to have the best life he can have while he is here. And we believe that we will know when his quality of life has deteriorated. We did with Michael, even though I stated in my trache post that I would have had one placed for him. The truth is that Michael was utterly done after seizing every day for 22 years. A trache would not have mitigated that reality.

    When Michael was 14, he had chicken pox pneumonia. At that time, 90% of patients with this condition died, including patients, who didn't have disabling conditions, while on a ventilator. Michael was on the vent for 3 weeks, extubated, and survived. He also had a Swanz Ganz catheter, which was risky.

    Upon Michael's discharge the chief of this special ICU took me into his office and said, "Of the 16 children we have in this unit, 2 were comatose, 5 have cancer, the rest are battling rare diseases. Your son was the sickest of all of them. And when he rallied, one of our coma patients came out of her coma, 3 of our cancer patients went into remission, and for other patients improvements were seen in blood work and other tests. I'm a scientist, and I don't or didn't believe in miracles. But I do now."

    Life isn't black or white, or neatly carved in stone. We really have no idea how long any of us are going to live, or whether any of us would reject a kidney if we had to have a new one. But we should all be entitled to take that chance, if we choose it.

    Sorry to go on and on. This subject, as you can imagine, is very close to me right now.

    My prayers will continue for Nick's happiness and health, for no more midnight calls and alarms going off, and for Nick's owie to heal quickly.

    And I pray for you and Jim. God give you the energy and the strength to endure the challenges and changes, and grant you many moments of comfort and peace washing over your newfound skin.

    Love & Light,

    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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