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.