Friday, August 13, 2010

Learning the hard way to never say never - Part I

I've heard this twice in the last week:

"I don't know why I need prenatal testing, I won't terminate no matter what is wrong with the baby."

It's a wonderful sentiment, that those people would love a baby no matter what. It's what we would all like to believe we are capable of. Unfortunately that sentiment is born of ignorance and naiveté. Those people don't really understand what "no matter what" means. I'm not saying this to be harsh or to criticize. I really hope the vast majority of people never find out what that means. I just need to say how much it hurts to hear that, and how much I would give to have that kind of ignorance.

Four days from now marks the anniversary of the conception of my only son. The son we wanted badly and tried so hard to get. The son that we had to let go. Some people may think we are horrible people for deciding to end a pregnancy. Some people think that we were playing God. Some people are kinder and just think that while they don't condemn us for our decision, they would never make the same one.

I've been meaning for awhile to record all of Aiden's story here and now is a good time. The discussion of prenatal testing and termination are so much a part of his story that it feels right to talk about both at the same time.

One year ago I was on my first round of Clomid after trying for 18 months to get pregnant again. I had developed a luteal phase defect on top of all my other problems so I asked my OB/GYN for help. We couldn't afford an RE so it was just a case of trying the Clomid and see if it worked. It did. Seven days after I ovulated I started bleeding. I cried myself to sleep thinking that my period had started too early again and I wasn't going to get pregnant. The next day the bleeding stopped and didn't start again. Five days later I felt weird and took a pregnancy test. It was positive. I was over the moon. This was so easy! We were going to get our second child and then we were done. No more trying desperately to get pregnant, no more miserable pregnancies. One more beautiful baby to cuddle and love.

My OB tested my HCG levels because there was a decent risk of an ectopic. The numbers did not double in 48 hours. I spent the next few days panicking. I was sure I was having a miscarriage. My OB put me on progesterone to try to help the pregnancy. At 7 weeks we had an ultrasound and everything looked fine. The baby was measuring a little small but the doctor never mentioned that to me. I found out later. So I was happy again. The pregnancy wasn't nearly as hard as my first had been. I was pretty nauseous but doing okay with work. I had planned to get the early prenatal testing done but time slipped away from me and it was too late, so I decided to just wait for the quad screen. The heartbeat was fine, I assumed the baby was okay. If felt like time was flying. Before I knew it I was feeling the baby moving, starting to show, and getting really excited about the 20 week ultrasound. I had waited until after I was "miscarriage safe" and not told anyone until after 12 weeks (wow - was I naive). I told everyone at work when my ultrasound was. We read "I'm a big sister" to my daughter every night. I even thought about taking my daughter with me to the ultrasound (thank GOD I changed my mind).

Friday, December 18th. My husband and I took the whole day off. We went out to lunch to celebrate the new baby and my new job. We meandered through a cute baby store and almost bought a bunch of big sister stuff for our 3 year old. We waltzed into the OB's office so happy and self-assured. I had planned just right. My bladder was full but not too full so I wasn't squirmy and miserable. The tech smeared the goo and went to work.

The very first thing I saw was the very large black circles on the top of the baby's head. I knew that meant fluid. In a weird moment of absolute denial, I said nothing to the tech or my husband. We talked about how different this one was. It was behaving and not jumping all over the place, making measurements hard. The tech was pretty quiet. I didn't notice. She asked if we wanted to know the sex and we said yes. She found the genitals and labeled them "boy stuff", it made us laugh. She left the room for a few minutes to see if the doctor wanted a look. I still wasn't alarmed.

She said we could go to the waiting room and the doctor would call us back. We laughed and talked quietly about how strange it would be to have a boy. I asked my husband if he thought his brother, who had lost his twin boys at 8 months, would be upset. We talked about names and wondered if Kira would be upset about not getting a sister.

The nurse called us back. The doctor sat down in front of me and said, point blank: "There are several things about the baby that concern me."

I remember my eyes filing with tears. I tried to listen but the list was so LONG, I just tuned it out after a while. I kept thinking, "did I do this?" I thought about the early signs, that we should have miscarried. I questioned why he was still alive. I thought I should have told Sean about the fluid, than he wouldn't have been so shocked. I thought I deserved this. This was the disaster I was expecting.

My doctor made it clear from the beginning that the prognosis was very poor. She refused to predict if he would live or not, or really explain what she meant by very poor. But it was pretty obvious what she thought. She said it looked like a trisomy - probably 18. She said trisomy 18 is universally fatal in boys. She told us that the hospital here, even though it is catholic, would permit an early induction (before the age of viability) if the fetal anomalies were incompatible with life. Apparently there is an ethics committee that okay's these things. She referred us to the maternal fetal specialist for an amnio. This happened on a Friday at 4pm. The earliest they could get us in was Tuesday.

I don't remember what we did the next 4 days. We didn't go back to work. We called our family and friends and told them something was terribly wrong. We cried a lot. We talked about what we would do. I researched trisomy 18 and tried to decide whether to carry to term or not.

Tuesday came and we went to our appointment. When the doctor came in he introduced himself and then just stared at us. I was a little disconcerted but so stressed out that I didn't give it much thought. I told him that we knew it was bad and that we wanted to know if he thought the defects were incompatible with life. We wanted to know if the brain defects were causing him pain and if it looked like his heart would make it through a full term pregnancy. He didn't really respond, just told us that he had to take a look first. He did a high level ultrasound that included an echo cardiogram. He didn't really talk to us the whole time. They couldn't get a look at the baby's feet because he wasn't really moving his legs. What I had thought were kicks were actually the baby arching his back and throwing out his arms. It looked like his legs were paralyzed. On the higher resolution I could clearly see the cleft lip and palette, the clenched hands, and the water on the brain. I cried the whole time.

The doctor finished and left to put his notes together. He came back in to do the amnio which was quick and painful and then talked to us. He also said the prognosis was very poor. But that was ALL he said. When we asked if he thought the ethics committee would allow induction he was very emphatic that they would not. He avoided all of my specific questions about the baby's brain and heart. He told me the brain defects were mild and would not cause the baby any pain. He also assumed the baby had trisomy 18. He referred us to a patient's blog, saying that his parents "celebrated his life" when I asked what happened to their baby. When I asked "what do we do now" he said, "just wait". The bastard didn't even have the guts to tell me that this was a fatal condition. He brushed off or ignored every question we had, and I got the impression it was because he was totally against the idea of interrupting the pregnancy.

I have to stop here, next time I will get into the amnio results and what happened after that.

18 comments:

  1. Oh Biojen. This just breaks my heart. For what it is worth, the fact that you were concerned about whether or not he felt pain is the most humanitarian sentiment I can imagine. I am so so sorry. It means so much that you are sharing all of this. Thank you.

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  2. Jen.
    I hope this process is cathartic for you. I am nodding my head b/c I know this story all too well and the feeling that comes over you when they tell you that the news does not look good. Thank you for sharing this. It is so clear how strong your love for Aiden is, I know you acted so that he would be spared pain.
    I have seen some posts about "what would you do if" recently. I think I uttered similar words before. The truth is that when I said that in the past, I had no idea what I was talking about and no clue of the countless conditions that are possible. You can never know how you will act until you are in those shoes (something hope most people never, ever have to live through). I feel so thankful to know you and to have had your guidance last spring.
    You are so brave and strong. Wishing you love and peace.

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  3. I want to tell you how much I support your decision. I do not think I would have handled this with as much grace. I also know that I would have made the same choice. You are not a pariah and I will kick anyone's ass that tries to make feel one iota of inferiority. Normal folks can all pass judgment safe from the idea that they will never be faced with such a hard decision. I just want you to know how much I respect you both for this. And I thank you for sharing this story, too.

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  4. I know what you mean about people making statements about what they would or wouldn't do when faced with heartbreaking decisions during pregnancy. I don't think anyone can make that statement unless they've been there.

    And I'm so sorry you had to deal with that doctor. Just awful for you.

    Maddie x

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  5. I want to thank you for your honesty. I would have never known that saying that phrase would cause someone else hurt. My heart aches thinking that I could have caused someone hurt with my words, I have been hurt all to well by people with their well wishes. You know them "its part of God's plan" "you're young you can have another baby" etc. I found sharing my story was very helpful for me in my time of grief. In a way, I am able to put the words out there in cyberspace and leave them there revisiting when I need to. I hope it helps you to write your story. I wish neither of us had these type of stories. Take care.

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  6. Jen, reading your story, and a past post of yours about the experience you had with not being able to terminate breaks my heart.

    And I too wish people wouldn't make blanket statements about what they'd do in other people's terrible, no-win situations. I can honestly, say, that having had a poor prenatal diagnosis, but not terminating, going through, and dealing with my son dying... even having had the experience, I can't tell you, or anyone what I would do if I were in that situation again.

    Because of my experience, I strongly believe that we cannot truly know what we'd do unless we are right there, in that moment, facing the decision. Anticipation is completely different than the reality.

    (It's something I've thought about, because there is a possibility it could be genetic, and if it is, there's about a 1 in 4 of it happening again.)

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  7. Jen, this story is totally heartbreaking, and I want to thank you for sharing it. I hope that writing it, and re-reading it, gives you some peace as well. Your experience at the ultrasound, and the need to make this decision, sound utterly wrenching, and I admire your courage in making the right decision under such terrible conditions.

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  8. This is heartbreaking. And I most certainly don't think you were playing god. I have never understood that line of thinking. You were and still are a fantastic mother to your precious little boy.
    xo

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  9. (((HUGS))) I too hope this is cathartic for you to write about. I had a bad triple screen blood test & u/s with my pregnancy in 1998. The amnio ultimately came back normal -- after THREE & A HALF WEEKS -- but the waiting was pure hell, & while the chromosomes were normal, my daughter was ultimately stillborn anyway. I have the utmost respect & empathy for people who have faced this situation, whatever the outcome was. It's something that nobody should have to face, & unless you've walked in those shoes, people should not judge those who have.

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  10. Oh girl. Big hugs. Tears and hugs for you and your family.

    For what it's worth, I think people who say, "I'd never do _______" are assholes. Oops! Not too charitable of me, and that in itself was a blanket statement. But really-NO ONE knows what they'll do, and NO ONE really WANTS to know what they'd do. Your little boy got acres and acres of love from you in the short time he was here, and still does in your heart.

    Gah. I'm just so, so sorry.

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  11. Wow, I am so touched by these responses. And thanks jeanna - I wanted to be honest here but I also didn't want to hurt anyone else. It's so easy for all of us to blithely comment on things we know nothing about. If anything, this tragedy has taught me to really watch what I say to people I don't know well.

    I can't believe how supportive everyone has been here. I almost don't want to finish because I don't want to upset everyone - the story only gets worse from here. Thanks so much for listening though.

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  12. you are not upsetting us, you are letting us in so that we may hold your pain for a little while. you are not to be judged or made to feel less than. your choice was made out of love and concern for your child. i understand because i had to consent to have cytotec (sp?) placed in order to deliver my girls. my fever was rising from infection and i don't know if i will ever forgive myself for not fighting for them longer or putting my life on the line for theirs, even though we knew that ayla's bag was already broken and that at 20 weeks there was no chance of survival. i still beat myself up and i think it is normal. we didn't grow up imagining a world where our babies are sick or die, and we are dealing the best way we know how.

    and your loss is no less because you chose not to have your child suffer. do not listen to anyone who says otherwise. they are wrong.
    hugs, my friend, i know this is hard. i left off in the middle of my story a month or so ago, and im still not ready to finish it.
    xoxo
    lis

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  13. Thank you for sharing so openly and honestly.

    As others have said, no one knows what they will really decide when faced with god-awful decisions they ACTUALLY have to make. Everyone can say what they would choose to do "in theory", but "in reality" all bets are off.

    I too had a baby with trisomy 18. I didn't know that even existed before my pregnancy?! Our daughter was born full-term and lived 2 1/2 days. She wasn't diagnosed w/ T18 in-utero because I declined a quad screen and amnio. I was naive. I didn't know things went wrong with babies. Unfortunately now I know.

    I hope this sounds OK - but I look forward to reading the rest of your story, if you choose to share it.

    ((Hugs))

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  14. Oh, how I hate when women say, "I don't do prenatal testing. I would never terminate. I love my baby." Don't they know that terminating is one of the most selfless and loving acts a parent can make for a baby who is so sick. Our baby girl also had Trisomy 18. She was stillborn two years ago Thursday.

    I wasn't able to terminate. I wanted to, made an attempt to do so, but it's a long story why I wasn't able to. Here's a link to our story.

    http://motherhoodthesequel.blogspot.com/2010/07/jennas-story.html

    I also look forward to reading the rest of your story, and I am going to follow your blog, too.

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  15. Oh my. Oh Jen. Those people who say that they do not want prenatal testing as it wouldn't make any difference to them are your equivalent to my 'people who say I wish this baby would be born already.' They are talking about something that they have absolutely zero understanding of, luckily for them.

    I agree with Mrs. Mother. It is one of the most loving and selfless things any parent could do for a child. But I'm so terribly sorry that you and your husband were confronted by such a decision. x

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  16. it was ages from when the tech started doing our last ultrasound to when she said 'i'm going to stop there'. ages. and i was blithely lying there feeling sorry for the baby, being prodded and poked. it genuinely didn't occur to me that something might be wrong. i think our brains didn't want to accept the possibility before we really had to.

    it's not fair, jen. i wish aiden was there with you. i really do.

    hugs xxxxxxx

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  17. Thank you so much for having the courage to tell your story. I don't know if I'll ever be able to write about our experience--I can barely talk about it at this point. So it's somehow comforting to read yours, just to know I'm not alone.

    There was a chance our child could have survived outside the womb--she was diagnosed with severe ventriculomegaly and hydrochephalus. But the liklihood of severe disabilities was very high, requiring multiple and dangerous brain surgeries, etc. The ambiguity of the possible outcome made the decision extremely difficult. But my husband, god love him, very honestly told our OB/GYN, "I don't think I'm a big enough person to cope with having a child with such severe disabilities." Our OB, who was wonderful and supportive, responded that being honest with ourselves about our ability to cope with the REAL circumstances of our baby's prognosis was the most mature approach we could take.

    I think it's impossible to come away from this experience not having regrets or doubts. But when I really think about our decision beyond my own sadness and longing to be a parent, I know it was the right decision or our daughter, as I'm sure you made the right decision for your son. Again, thank you for telling your story.

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  18. It absolutely breaks my heart that you had to go through this at all, but to have to go through it with a doctor like that is unimaginable. I'm so sorry.

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