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Wednesday, January 30, 2008

To Hospice or not to Hospice.

Almost five years ago, my best friends, Joanne and Bill, gave birth to triplets three and a half months early. Bennet Matthew died within hours of birth. Kathryn Dora and Sophia Angelica kept fighting. Katy developed a near fatal infection to the bowel requiring surgery that removed the majority of her large intestine. Sophia developed multiple allergies, cripling colitis and colic. After 6 weeks, Sof came home while Miss Katy Bug spent another 4 weeks at Dupont Children's Hospital. In that time, I spent every free minute I had between Sof and Katy Bug, helping their poor exhausted parents juggle what noone should ever have to juggle. Katy Bug finally came home with an intravenous line and feeding tube to recieve nutrition. She needed both because her bowel could no longer absorb the nutrition it needed. Her stays at home were broken with long trips back to Dupont. After five months, Katy Bug required weekly blood transfusions and would scream in pain from the misshapen blood cells getting caught in her joints. Her many infections has caused her bone marrow to malfunction and she could not produce normal blood cells. She endured many doctors appointments with suggestions of bowel transplants and spleen removals (none of which could be done until at least 2 years of age) and many doctors telling her parents that she would suffer for 2 years but she wouldn't remember the pain. They gave her a 40% chance of surviving the surgerys. (I still cringe when I write this.) Her hematologist was the saving grace in this awful time. She introduced the idea of hospice and after much prayer and anquish, Bill and Joanne chose to bring Katy home. The gastroenterologist told Jo and Bill that he would never authorize hospice and that this was not a choice for parents but for the physicians. The hematologist warned them not to tell anyone what they were doing because someone would call children's services and intervene. THEIR CHILD WAS DYING IN FRONT OF THEIR EYES!! Katy was set up with hospice in the evening and the next morning suffered a massive seizure and never woke up again. She died that night with all the people who loved her the most around her.

(these pics are anywhere from 4mos old to 7mos old withe her parents...)

Now five years later, Joanne is a member of a Palliative care taskforce in Pennsylvania that is fighting for children to have the right to die comfortably and at home. Today in the Philadelphia Inquirer the task force was front page news:
Getting hospice took over six weeks. "I am not sure every parent could do what we did", Joanne said. "But it was the right choice for Katy. The last thing she saw was her family and her home."

People judged Jo and Bill for their choice, some had the audacity to say that they killed their child. They continue with counseling and do all they can to help Miss Sophia grow. She is mildly autistic with persistant developmental delays but a happy, loving child.

Why this post? To make aware others of the need for children to be allowed to die in peace and without pain in the surrounding of comfort.


the dragonfly said...

I cannot imagine the choice these parents had to make. I hope little Sophia continues to be happy and healthy...

painted maypole said...

oh. what a painful post, but thank you for speaking up about this. and thank you for all you did for your friends and their beautiful baby.

Mary Beth said...

I am crying again for all that they (and you) went through. One of my favorite pictures of you is the one where you're holding Katy.

It amazes me over and over again how horrible people can be, even if they are sure they are doing the right thing. They have no right to say something like that to Joanne and Bill - these parents went through hell and all they wanted was for their child to die in peace with love. I really hate people sometimes!

Hey Teach! said...

Great post! I can only imagine how hard it was for you to write it and relive everything. I am sure Joanne and Bill appreciate your efforts! You were right, no parent should have to endure what they did, especially the ignorance of others.

ewe are here said...

My heart goes out to your friends, and to you... such a terrible decision they had to make, but in truth, it's a decision I would have made as well.

Hospice should be a right to all, not a shameful, stealthy secret to make other people feel better about their own choices.

(And I'm especially sensitive about this topic, too: when I was a young girl, my littlest cousin was found floating in a pool, was revived, but all for naught as he was brain dead as a result. The week-long fight with the hospital to 'pull the plug' was so draining and horrendous for the family; it shouldn't be like that.)

Kyla said...

What a terrible choice to be faced with. If it comes to it, I strongly believe it SHOULD be the parent's choice and not a physician's.

I'm so sorry for the things people said about your friends. No one, NO ONE can judge a situation like that from the outside.