Monday, February 21, 2011

"Incompatible with Life"

***Disclaimer...This is NOT a judgment on parents who have terminated pregnancies for reasons I wouldn't have. I am so sorry for those parents who have had to face this decision and I understand how hard it is to make because I'm there now and it sucks. This post is an extension of my own grieving inner monologue. In addition to parents who've terminated for reasons I wouldn't, I'm also angry with cranky pregnant women, women with newborns who look annoyed and my own children who get cranky with me for being sad. None of these are logical or lasting so please do not take any of this personally. This is grief talking, and it ain't pretty.

A time to decide, a time to heal. That was the name of one of the books the genetic counselor gave us after we found out about the holoprosencephaly and that, for our baby, it was "incompatible with life."
The copy we got was just that, a photocopy of a book, we could occasionally see a pair of very hairy hands that were holding the pages in place on the copy machine. Nice watch though. I read the book in one day (its not very big) and cried through most of it. I read story after story written in parents own hand of their decision and how they dealt with it.
Many parents talked about how healing it was to hold their baby after the pregnancy had been terminated so that they could say goodbye and know that their baby was real. They name the baby, have them baptized, dress them, take pictures and hold the little life that never quite made it.
There were many different diagnosis that prompted the termination of these pregnancies. I found myself angry with the parents who terminated for reason's I wouldn't have. The babies with downs syndrome or sever retardation that I would have kept but they didn't. Those parents were given the option of life, I wasn't and I'm angry about that. I'm angry because I would kill to be able to have my baby alive and see them look at me with the flicker of recognition and trust that my previous babies did. I'd kill to have a baby who had a chance at life, no matter the state of that life. I'd love to be learning how to live with a high needs child and how to make their life the best I can. But those are not options I have just now. The only option I have is death now or death in six months. All I get is "incompatible with life."
So I'm angry at those parents who had life, and threw it away. They took the precious life they had and decided not to take it because it wasn't perfect and wouldn't ever be.
I understand that quality of life weighs into this decision and that parents don't want to cause their children suffering and sometimes it just seems easier to end a life before it really begins than to deal with the imperfections. But from where I sit now (and I'm sure this will change because everything does) I just can't understand not being overjoyed because at least your baby had a chance. There was a chance for life. From one who is incompatible, that seems like a lot.

Thursday, February 17, 2011

A Long, Bad Day

On Wednesday last we had a routine ultrasound for our third child. I was at 12 weeks gestation and measuring a touch big so we wanted to confirm dates and make sure it was only one baby, not two. We brought the Pudding and the Tyke with us so they could see pictures of their new baby brother or sister. The ultrasound tech made me change into one of those awful gowns, squirted the goo on my belly and did her thing. After the initial scan she stepped out to talk to the doctor which is all pretty normal. But she seemed to be gone for a long time. When she came back she said we needed to do a trans-vaginal scan as well because my cervix was a little tipped or something like that. I said ok and since the kids had already been banished to the waiting room for being children she went ahead and did what she had to do. After that was done she consulted with the doctor again for a long time before giving me the ok to get dressed and leave.
I went home with the kids, put my son down for his nap and generally went on about my day then at about 3pm I got a call from my family doctor. She is the one who ordered the scan because if my midwife does, insurance won't pay for it, it's a whole thing. Anyway, she said that the scan had been irregular and that there appeared to be a cyst on the baby's brain so we needed to talk to the people at Maternal-Fetal medicine.
I didn't believe her.
To be fair to myself here, this is the same doctor who sent me to get x-rays when we knew I only had a sprain, sent me to a specialist when that same x-ray showed a sclerosis that hadn't ever bothered me. The specialist took on look at the picture, asked me if it bothered me at all and then told me to go home and come back if it hurt. This took about 6 hours of my life for pretty much nothing so when this doctor says I need to see a specialist, I tend to take it with a grain of salt.
I had the report sent to my midwife who wouldn't send me out unless it was pretty bad. When she got a look at it she said the same thing so then I finally started worrying. I called Maternal-Fetal medicine and after waiting on hold for 10 minutes, explaining the legality behind midwifery (no, she really doesn't have to have a back-up physician and no, I'm not being treated by an ob/gyn at all) and generally who the hell I was they finally set an appointment for Monday.
We waited all weekend for that appointment. I tried to be upbeat, I went about my normal routine and took care of my kids. I didn't wash a dish or clean anything so my house looked pretty terrible but that's not that far out of the ordinary. Saturday night I took a shower and prayed that God would take this weight that was resting on me and lift it. I felt in that moment that He did. I went through the next day at church with a smile on my face and a grain of confidence in my heart that everything was going to be ok and God was going to work this out. On Monday morning as I dressed for my appointment, in what I thought was the ultimate act of faith, I put mascara on. Not the waterproof mascara that gives you just a hint of definition but the va-va-va-voom, sex kitten eyes mascara that I wear when I want to look really good. Like I said, it was an act of faith. God was going to take care of this, I wasn't going to have to cry.
Faith and hubris can appear erily similar or so it seems to me now because after an in-depth ultrasound on a much fancier machine and a VERY long consultation between the doctor and everyone else in the practice they finally called us back and told us that our baby was not going to make it. The diagnosis was holoprosencephely which means that part of the baby's brain just never developed. In our case it's both frontal lobes that never materialized. Enough of the brain is missing that it is extremely unlikely that the baby would make it to full term and completley impossible for it to do things like breathe on it's own, see, speak, remember, suckle or live. What we have is incompatible with life.
The doctor thinks this may be caused by a chromosomal abnormality called Trisomy 13 which means it is unlikely that we could do anything about preventing it and that it's unlikely to occur again. We're waiting on some test results to find that out for sure.
So now the question is what do we do. Do we continue on for possibly 6 more months and have the baby stillborn or do we terminate the pregnancy now? The question is not one I ever thought about. Even when I was 24, unmarried, at the beginning of a career that was finally starting to go and found myself pregnant, I didn't consider "termination." I always felt that procedures like that should be reserved for situations where the mother's life is in danger. I always thought those people who terminated to avoid a child with mental disabilities were missing the point and taking the easy way out. I never really thought about those for whom life is not on the menu. We can either have death now, or we can have it later but death comes either way. Life is not one of the options we are being given.
Because of that fact we are now trying to decide when and how to end this pregnancy. An induction seems like the best way but I am not eligible for that for another 5 weeks. That's 5 weeks of postponing the inevitable and living in limbo. For an immediate solution, there's the D&C. This is the usual abortion procedure which involves dilating the cervix and using tools to scrape out it's contents. This is no judgment on anyone else who has had this procedure done before but for this baby, this very wanted and loved baby, it feels cruel. We don't know how much they understand or how much they can even feel at this age but I imagine that were I a little fetus bobbing around in the water and bouncing off the walls of my home, feeling that home slowly and steadily squeeze me out might be slightly less scary than to have the door forced open and a big metal tool drag me out. I know the result is the same either way but it doesn't feel that way to me.
As a mother it is impossible to choose the way my child will die. This is not a choice I ever thought I'd have to make. I can choose to carry this baby to term and give birth to a dead baby. I can choose to have an induced labor in 5 weeks and give birth to a very small dead baby or I can have an operation now and not give birth at all. None seems any better than the other. None of those choices seem any kinder to anyone than any other.
It has been one week since that first ultrasound, 5 days since I was able to go to bed without crying, 3 days since we got our diagnosis, a day and a half since we tried to resume our current parenting obligations and it will be at least another week before I have to cook for myself because so many sweet friends have understood and sympathize and do so with dinner. We are lost in a sea of sadness just now and I just pray that God will answer this prayer and take the choice from me. This isn't a decision I want to make, I don't want to know the moment my child dies and know that it was my decision that caused it. Take this one away, it's too big for me.