Friday, June 10, 2005

a link

I'll post more later why this story is important to me.

OK, it's later so here I go. Read the story at the above link, then come back to this - or it loses a major element of something.

When my daughter Alexis was 36 hours old, we learned that she had a congenital heart defect. She was what used to be called 'a blue baby' meaning that her heart was unable, due to some defect, to circulate oxygen throughout her body. They're called (or used to be) 'blue babies' because the lack of oxygen causes their fingers, toes and lips to be blue tinged.

She was transferred to another hospital with a neonatal intensive care nursery, and a children's hospital. One of the best children's hospitals in our area. Over the next few days we were given best case, and worst case, scenarios, we were told to wait for test results and for the team of doctors to asess her case. After 2 days, we were told she was a worst case scenario. She had 3 separate defects. The 2 most serious being Pulmonary Atresia and Tetralogy of fallot plus venticular Septal Defects (VSD). Each of those is linked for those of you who want to really understand the details, but in short, basically no part of her heart was working correctly. She was born with a chest full of hamburger meat, which during gestation her body had tried to overcome by creating other vessels from her aorta, and keeping her ductus open after birth as well. She was amazingly healthy for a child who was so sick. The worst ailment she showed outwardly during her 12 days was the horrible diaper rash caused by her body's inability to circulate leukocytes to the area to combat the irritation caused by the diaper and its contents.

Now, when she was 5 days old, we were told she'd need major open heart surgery, and a pulmonary transplant - they were going to give her a whole new pulmonary artery, close off the extra vessels, and close one of the septal defects. They told me she would of course be in danger from any number of complications, but with her relative good health her chances were good. (80 - 90% was what they told me) but it's a damn hard thing to face, knowing that they'll be inducing a coma that may last weeks, cracking open her breast bone, adding and subtracting parts of her heart, and all the while she'll be on a circulatory machine - she'll be dead, a machine will circulate her blood and hopefully avoid brain damage, but, no guarantees.

I had to think to myself at the time, how much she'd be enduring, what her risks were what her chances were, all the possible complications - and her long term prognosis, like the repeated heart surgeries just like this that she'd have to undergo throughout her life. Meanwhile, she was pink and smiley and happy and growing... which is unusual for a child in her condition.

So I asked them, what if we decide not to have the surgery, what are her chances then, what would happen?

I was told that there would be a court order, forcing us to consent, or she'd be taken from us, and the surgery would proceed. We had no choice. I knew I may be looking at the idea that I might only have her a few days at all, she was facing death, either way. So knowing she may only live a few days, I was left to lose her to the courts, lose her to death, or both. If she was going to have the surgery anyway, I may as well consent, and still have the right to see her while she was hospitalized, and assuming she survived, I could take her home.

I signed the papers.

On her 12th day she went to the OR. She spent 10 hours there, laid open like a side of beef, being butchered.

She went in happy and outwardly healthy, doing amazingly well. She came out purple and bloated and comatose. Five hours later she died. It had all been pointless, she suffered, and I couldn't stop it because Department of Social Services said so.

I'll live the rest of my life not knowing how much more time I might have had with her if the government hadn't stolen my right to have it.


  1. Oh , E. That is a very sad story. I don't know what to say except that I love you and admire your strength more than ever.

  2. Love you too Erin, but there was no stregnth involved on my part really. . . hers, yes. Mine? not really.

  3. There is strength in the will to continue on, E. There is strength in not letting the pain eat you alive. There is strength in being able to talk openly about it now. Don't shortchange yourself.

  4. lol Erin, honest to god, it isn't short changing myself, it's just being honest. Going on was a side effect of not having the energy to make the alternate decision. I didn't choose to go on or not to, I just kept somehow waking up alive. I think that was like, I dunno, biology and chemistry and stuff.

    The pain did eat me alive. The Erin you know is not the Erin you would have met 4 years ago. She's dead and gone.

    Talking openly about it might be misconstrued as strength. Mostly it's just that I was tired of her being treated as some shameful secret no one wanted to talk about.

  5. The human body is an amazing thing. I know you will always wonder, but I think had there only been one problem, she could have healed herself. Without surgery you'll never know whether it would have been minutes, hours, or days. I think the end result and heatbreak would have been the same if not worse. Then, it would have been, what if we had let them do the surgery? I'm not saying this very well, but it was a terrible place to be regardless. Thanks for letting us in.

  6. Erin,

    Your story touched a place inside; let me share mine with you.

    My first was born was mentally disabled. We thought for awhile autism, he was misdiagnosed, re diagnosed, continually for many, many years. At one point I was convinced by others, professionals in the field, that he could not be helped at home, that a special school was best. I lost him, he went, it broke my heart- and his. From there was a succession of hospitalizations that began due to his poor reality testing. I was desperate for help and struggling to get him the best treatment I could. Decisions were made and continued to be made by officials that caused him great harm. I was at this point a single parent, trying to work; there were endless meetings, trips out of town, and costs of attorneys that were preparing for relief unless something was done for him. There were group homes where he was physically and mentally abused, things he is just beginning to share with me. This was a continuing nightmare until I finally stood up to the state, petitioned the court for his return home.

    Social services, state mental health folks (some state mental health systems are abysmal)don't always have the answers, and many times their suggested solutions, plans have devastating consequences for the children. I have been where you are, in a different but no less profound way. My heart goes out to you.

  7. Ginger~

    I hope this doesn't sound cold but I would have preferred to be in my position rather than yours. Alexis was almost assuredly going to die anyway, regardless of surgery or lack of it - and honestly, most of her suffering was done in my mind, as she was so young, and completely unaware of anything once she was induced into the coma.
    Your son, on the other hand, suffered, and still continues in ways, to suffer. I'm sorry that you, and especially he, has been caused so much pain, physically and mentally.

    As parents, we care most for our children, want more than anyone else to do what's right, what's best. When the government takes over, the results are rarely good - to them our children are numbers, cases, statistics, for us, they are our lives.

    Good luck to you, and to your son. And thank you for telling me your story.

  8. *hug* E. Damn, I am sorry that so much happened with Alexis. I never knew all that had gone on. I think V is totally right that if you had faught them, you would have lost her, and then beaten yourself up for delaying the surgery. So, you did the painful right thing. But it still just really gets to me when the state decides they know better than you how to live your life, and how to raise your kids.

    On an aside, did you see that in the Texas case, the kid's cancer was back? The doctors were right... And the parents agreed to the care now, and they have their other kids back. It was still wrong for the state to force that, but...

  9. Dman!

    My understanding of the other case was that Doctor A said, she's in remission, but we're going to continue to treat her. then the parents said, we want a second opinion, so hold off until we get it.

    It wasn't as though they refused treatment altogether, they just wanted to make sure that Dr A was right about what he was saying, which apparently he wasn't - since he said she was in remission.

    I am glad she's getting treatment if it's what's best for her, but the ordeal the doctors and DSS have put her throughwas ridiculous, considering that Dr B of the second opinion clinic no doubt would have spotted the return of the cancer, and the parents would have then continued with the treatment anyway.

    Anyway, with Alexis. . . there will always be questions, would be had she not had the surgery. I don't mean to say that I regret trying to save her life through surgery, I can't help wondering though if things might have been better, or longer maybe, without it.

    To be honest, I always felt the surgery was the right thing to do, I mean, with it, at least there was a CHANCE that she'd live, w/o there was none. I just dislike that DSS and some doctor had the power to controlit.

    It's the old what-if game D. I try to avoid that game, but sometimes it plays itself inside my head.

  10. Anonymous1:50 AM

    pikey, glen:

    i dont tear up often and when i do its usually selfish. im sorry for this. sorry posting this may make you think ack on it.

  11. lol Pikey, Glen - O ye of 2 names - (or 3, Pikester :P ) you're always always welcome to comment on my blog!

    I didn't mean to make you tear up, but no, it doesn't make me go 'ack' about the post, or your reading it.

    It is what it is, you know?