Kathleen emailed me to report how tired, confused, exhausted she is. How she wonders if she's doing the right thing. She received an email from SOFT indicating that the only two surgeries they know of on children with similar conditions did not end well.
I looked at some of the comments I've received and on this blog and realize that many people are figuring that 1) Kathleen is distressed, and not rational, and there are, in fact, doctors who will help her, but she just feels like they're all against her child's condition 2) Maybe you just let this baby go.
The point with comment 1): In my interview she said three told her that because of the baby's condition, they wouldn't do anything. I asked further, and she specifically mentioned one who said no doctor would help because of her baby's condition. She also said that every physician involved advised that she abort.
At the moment a doctor begins to tell you you're wrong, you doubt. And you feel like a grassy knoll theorist for doubting. You wonder if you're being irrational. You wonder if you're being selfish. You know that doctor ostensibly knows far more than you.
Jen told me "even if one (doctor) says no- as a parent you start questioning if you would be horrible to try something. when (zoe's pediatrician) was mad (the instance where this pediatrician had a nurse watch Zoe's older brothers in a separate room so she could scold Jen for over 20 minutes for pursuing heart surgery)- i felt a little guilt for wanting to try...it became a big stuggle in my heart...am i really doing the right thing? you want to trust the docs are doing what's best. if i would have listened to her my daughter would be dead right now from heart failure that could have been fixed "
One consistent comment I hear is a linkage between an elderly cancer patient or Alzheimer's patient or terminal patient and Kathleen's baby. I find the conditions not analagous. The elderly patient is available for study. There have been millions of living people with terminal conditions studied. There are scans, tests, and a wealth of history from which physicians are drawing.
Practically all - and by that I mean over 90% - of Trisomy 18 babies are aborted. So, any conclusions about the remaining small percentage represents, in my opinion, a skewed sample. What percentage of Trisomy 18 babies are like Zoe - need help to breathe at birth, and then are capable, with love and sacrifice, of living for a year? The doctors don't know. They don't.
Which leads me to comment 2). I am not advocating that Kathleen HAS to do anything. What I'm saying is right now SHE IS NOT GIVEN A CHOICE. What if she believes her daughter should have a chance? The doctors are telling her she has none - not because of the surgery, but BECAUSE OF TRISOMY 18. I guess this is where I write the above paragraph again.
Doctors told us that maybe we didn't need to turn on the jaundice lamps; that maybe we didn't need to feed her too much; that maybe we shouldn't treat an ear infection; that pursuing a heart surgery was selfish, that Zoe would "Always be like this." Not because of the patient, but because of the condition. The patient is snoring next to me right now.
That's the point. The point is that Zoe would be dead if we weren't given a chance. Parents are not being given a chance to decide. And that's wrong.
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I agree. It's very difficult as kind, compliant, well-mannered, Christian, Americans to buck the system. I've experienced, through the years, that: doctors can be wrong; that we must be advocates for our children, our parents, our friends, and for those who need some support behind them. We believe in life and we need to pursue it, even at the risk of appearing crazy to others. That's the normal, world view of us, anyway, so that's nothing new. God gives guidance and strength for the battle.
ReplyDeleteBack in 1964, (the dark ages of neonatology, if it even existed as a specialty) 10% of babies with tri 18 lived past a year and 1% past ten years.
ReplyDeleteToday, the statistics have worsened, not improved, despite incredible advances in neonatology.
In 1981, a geneticist put out a call in the Am Journal of Genetics for all cases of tri 13 or 18 in which the children were older than 10 yrs of age. Imagine that!! He wanted to understand why some kids die young and others don't. That was smart thinking!
Then genetic testing and termination advanced. The most recent article about trisomy 18 (last summer) states that is is "unethical and contrary to the child's best interests to resuscitate a new born with Trisomy 18 for whom a cardiac condition has been detected prenatally." Imagine that!!
The article (published in a major journal called Pediatrics), went so far as to say that any neonatologist who resuscitated was acting based on the parents demands and contrary to the chld's best interests.
What is interesting about it all is that what is clearly a judgment on quality of life has, over the decades, worked its way to disguise itself as a medical definition.
This article, written by leading American MD/EThicists (and heroes, in my mind) explains it well.
http://livingwithtrisomy13.org/Koogleretal.pdf
In this video, a man describes having to fight for his daughter's life (trisomy 13) when the staff covertly tried to allow her to die.
She is now a beautiful 7 year old walking independently thanks to the efforts of her family.
http://www.youtube.com/watch?v=UNzJt8fbavo&feature=related
Barb
www.anniefarlow.com
At what point do you hand this over to God?
ReplyDeletehand this over?! at what point has anyone tried to take this from God? Prayer, wisdom, patience, responsibility, protection of life - none of this is an attempt to "take" from God (as if that were even possible). By doing something, is that somehow an attempt to do without the almighty power and love and strength of The Almighty Physician himself? It sounds like from the start these parents have handed this over to God, which is why they cannot abandon their little ones in good conscience. My prayers and support go out to all of you who have been called to this extraordinary task - may God grant you wisdom, patience, and peace in all the decisions that come your way. And may God give strength and victory to these little ones who are gifts from His almight hand!
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