Friday, August 13, 2010

Learning the hard way to never say never - Part II

We had the amnio on Dec 22, two days before everyone would be closed for FOUR FUCKING DAYS for the Christmas weekend. There was a slight chance we could get the initial results back before the holiday, but absolutely none that we would get the full results back. The wait was agonizing. We were so sure we were dealing with trisomy 18 that when we got the initial results back on Dec. 23rd we were in shock. They tested for trisomy 18, 21, and 13. They all came back normal. The genetics counselor was the one to tell us this. Thank god, we didn't have to talk to the asshole doctor again. She told us that they still thought it was a trisomy, just that it might be mosaic (not present in all cells). She was careful to emphasize that the outlook was bleak no matter what the results were, given the severity of the baby's defects. She was the one to tell us what the actual defects were. She answered the questions that the doctor wouldn't. I asked her about the ethics committee and although she also didn't think they would okay an induction, she was much more sympathetic.

I don't remember exactly when we decided on a name. Neither of us wanted our baby to die without a name. We had been waiting to find out the sex before looking for one, so we didn't even have a list. Sean and I both spent hours combing through baby names, trying to find something meaningful that we would both like. Nothing struck us. Sean asked if there was any name I liked and I said there was but it wasn't one I would have used for a living child. Both of us are against really popular names and the name I liked was VERY popular. I told him what it was and he didn't hate it. A couple of days went by and I couldn't find anything better so we decided to call our baby Aiden. It seems important to use his name for the rest of this story.

Usually a full chromosomal analysis from an amnio takes 7 to 10 days. They have to culture the cells to get enough to run the tests. The genetics counselor warned us that we might not get the results before the New Year's holiday. The exact sequence of events is all jumbled now but I remember frantically searching for a humane way to end the pregnancy. I DID NOT want to give up my son, but we were convinced that he would suffer, if he wasn't already. I asked the genetics counselor and my OB what we could do. Without the hospitals cooperation, our only option was an abortion clinic in a large city 6 hours away. I called the one I was told about and asked about the procedure. At 20 weeks they do what is called a D&E. (If you've had one - please skip this part, you don't need to read it) I can't go into the detail here, you can look it up if you want, but the description was horrid. I was sobbing and barely understandable when I asked if they anesthetize the baby first. She said they give an injection to stop the heart before they do anything else. While that was reassuring, the knowledge that I couldn't see or hold my son, that he wouldn't be intact, was more than I could take. I also couldn't imagine walking into a waiting room filled with perfectly healthy babies that just weren't wanted. I've always been pro-choice but that was just too much to ask of my right then. My heart was being ripped from my chest by slow degrees and it felt like the medical community was just twisting the knife. I thought about carrying to term, although the thought of walking around for months visibly pregnant with a dying fetus was pretty horrible too. I called the genetics counselor back and she gave me some advice that I will be forever grateful for. She told me to call another fetal specialist in town, one who might have other "options". I asked my OB about him and she agreed to talk to him on my behalf. Later that day, a Monday, his nurse called me and told me that we had another option.

She told me that the doctor does reductions in the case of high order multiples. She told me that he was willing to do the same procedure for us if we paid cash and didn't tell anyone. That way, we could show up at the hospital with an already dead baby and they would treat us like any other grieving parents, instead of criminals trying to murder their baby. I got off the phone with her and WAILED. I can't even call that crying. It was the most soul wrenching, painful moment of my life. In that moment I really accepted that our son was going to die, no matter what I did. The only difference between then and later was how much Aiden would suffer. The really horrible part was that the doctor was going on vacation right after the New Year. The only time we could see him was December 30th. We would have to make the decision that day because by the time he got back it would be illegal to perform the procedure because I would be past 24 weeks. We had exactly two days to decide the single most important thing of our lives. I still wasn't completely convinced that termination was the best choice. I just did not know what to do. Even though the outcome wouldn't have changed his prognosis, I wanted to have the amnio results before I had to decide. I just needed an answer, some type of reason. I was on the phone with the genetics counselor daily. We finally got the results the morning before the consultation with the new doctor. Aiden had an extremely rare deletion of the 2nd chromosome. I've only found two living people with it. One is an adult male that has to be restrained constantly or he hurts himself, the other is a little girl that leads a fairly normal life, although she has severe delays. Neither of them had any of the defects that Aiden had.

We took this information with us to the new doctor. We had researched as much as we could in the few hours before. My sister, a medical resident, had flown in the night before to help me. She went with us to our appointment to help ask questions and give support. The doctor was a MUCH nicer, much more sympathetic person than the first one. He talked to us like we were human beings and answered all our questions. He did the same scan the first doctor had done and told us what no one had bothered to until then. Aiden's defects were very severe*, there was an extremely small chance he would live, but he would be a vegetable. The clenched hands and lack of leg movement indicated severe neurological damage. However, if he was born and his heart was stable, we would have had NO CHOICE but to hand him over for surgery to close the spina bifida and put in a feeding tube. The doctor told us that if we refused those treatments, that social services would remove Aiden from us and a judge would order it done anyway. There was not a great chance of him surviving surgeries, assuming he lived that long. So we were faced with multiple surgeries on a vegetative child, immediately after birth. We would probably never take him home, and he would never talk, walk, smile, eat on his own, and would probably be deaf and blind. I couldn't imagine the horror of having enough awareness to register hideous pain but not be able to see, hear, or communicate in any way. When he told us that, the decision was made. I wanted more than anything to hold by poor baby and tell him I loved him while he was still alive. But in the end, my reasons for wanting to carry him longer were all selfish. I wanted him with me. I wanted to smell him and and feel his skin and sing to him, just once. But I had to let him go. I had to. He was so small, so defenseless, so dependent on me to make the best decision for him. It was the hardest thing I have ever had to do when I told that doctor to do the procedure. Part of me died right then and there. One thing that I resented, and still do, is that I was the only one who could make this decision. My husband thought it was the right thing to do but would go along with whatever I could live with. Ultimately, it was all up to me. It was a crushing burden and I've never felt so alone.

After I was prepped and we said our goodbyes the doctor injected a numbing agent into my belly. It hurt more than anything had so far. My husband was holding one hand and my sister the other. We were all sobbing. I wanted to watch but couldn't bring myself to. I knew if I saw Aiden flinch I would freak. The doctor used a needle like the amnio needle to inject potassium chloride into his heart. It seemed to take forever. I imagined him moving the needle around, trying to get it placed exactly right, while Aiden moved around, completely unaware he was about to die. My sister watched the monitor and I still want to ask her if the doctor got the right spot on the first try. I can't stand the thought that Aiden hurt for more than a second so I haven't been brave enough to ask. It was over so quick. One long, painful stick, some valium, and a dead baby. I was pretty numb. I know I went home and somehow interacted with my daughter, I don't know how. We had decided to wait until the following morning (Thursday) to go to my OB's office and from there to the hospital to be induced. That way we would be sure of having my OB on call. So that was our last night with both our children in the same house. One alive, and one dead.

I can't believe how long this is getting. I think I can finish in one more post, I have to stop before I get a migraine. In a way the next post will be the easiest one to write, as I've done it before. At this point all the agony was past and we had only to say our final goodbyes. One more physical trauma to get through.

*I did this elsewhere but I wanted it connected to this post. Here is the most complete list of Aiden's defects, taken from the records I have:

-Hydrocephalus (water on the brain) in both lateral ventricles and the third ventricle

-type II Arnold Chiari malformation (brain sits too low and is squeezed into the spinal chord - this is an extremely painful condition that the first doctor did not tell me about even though I specifically asked)

-agenesis of the corpus collosum (the structure separating the hemispheres of the brain is missing)

-meningomyelocele in the lower spine (spina bifida - the spinal chord is outside the body)

-ventral septal defect, atrial septal defect, and ventricular hypertrophy (heart defects, caused by the failure of the neural tube to close in early development)

-bilateral (both sides) cleft lip and palate.

-none of the three ultrasounds found a stomach bubble. Most likely there was no stomach or the trachea did not reach the stomach.

-enlarged kidneys

-too much amniotic fluid

-severe growth restriction

-clenched hands

-rocker bottom feet (his feet looked perfect after he was born but his legs were deformed)

17 comments:

  1. oh poor poor Aiden and poor you. im so sorry. i wish things were different. thank you for sharing your story and i just know that you made the right decision and spared that baby unimaginable pain. he only knew peace, that is what i choose to believe.
    i have this idea that if an animal or human being is in the state of alarm or distress or fear that comes from an illness(es) such as you describe, or are wounded horribly (this is how i soothe myself when i see or hear about animals who are hurt or abused/people who are tortured/sick/dying) that their spirit leaves their body far before the heart stops beating. by the time that happens, their soul is in a better place, one of comfort and peace. i hope this helps and doesn't sound batshit crazy.
    xoxo
    lis

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  2. I'm so sorry you had such an awful experience on top of losing your son. You made the best choice you could for Aiden but I'm so sorry you had to make it.

    Sending love.

    Maddie x

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  3. Lost for words. My heart breaks for you.
    I am so very sorry.
    xo

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  4. Thank you for sharing some of Aiden's story. It's heartbreaking, and I'm so sorry.
    Thinking of you.

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  5. Jen.
    I continue to be horrified about how your medical team treated you. It stands in sharp contrast my own experience (I actually felt that my medical team was kind of pushing the termination-not that they said this directly but it was obvious). If the experience of losing Aiden was not enough, for them to make it that much harder on you is just too much. You are such a brave and strong woman to know what is right for your child. My heart breaks for you and Aiden. I know he would be proud of his momma and the choices she made in order to keep him safe and protected.
    I am forever grateful to you. Sending love your way. Thank you for sharing this story. I really do beleive that more attention needs to be given to choices like this. These are things that nobody talks about out loud and it just shouldn't be this way.

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  6. I am so sorry. After the abortion clinic made the mistake they did, I tried to find a doctor who would stop Jenna's heart the way your doctor did. I couldn't find one. Our state is very conservative and most of them were afraid of getting into trouble.

    I wish I could give you a big hug. I remember that alone feeling so very well. I felt like I was the only one in my situation. Big hugs to you.

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  7. Oh god, honey. I am sitting here sobbing for you, your little Aiden, the unwinnable situation you were in. I wish I could scoop all of you up and just hold you all . . . and if you knew me, you'd know that's not something I would EVER say :)

    I have nothing else, just hugs and good energy.

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  8. I am in tears for you and for your sweet Aiden. You are so strong. This reads like a horror story unfolding. I am so sorry this had to happen, but I am grateful for your story.

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  9. You were selfless in making the best decision for Aiden. It's a decision no parent should ever have to make.

    I'm sitting here thinking what a strong and courageous woman you are. Then I also think I how sometimes hate when people tell me that - I'm only doing what I can do. But we do our best with what we have at any given moment.

    I am so sorry you had to go through this. And I know the death of our babies is never just past tense - something we go through at the time and then just move on. I know this is a part of you forever. So much love to you.

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  10. I am so sorry that you had to go through this. While one can never say so with certainty what one would have done without having been there - from what you write I believe this was the right decision that you made for your son. And I think that it is very unfair, that you had to find a doctor to do this "unofficially". It is wrong that there is no place to go, where one is treated with respect, and choices and decisions are openly accepted. Best wishes to you and your family.

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  11. Oh Jen. I'm so sad and sorry for you, your family and your sweet boy. I think you did the very best for Aiden that you could, you loved him. So much. Every choice you made was with Aiden at the forefront of your mind, to protect him and to preserve his well-being and dignity. x

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  12. you should never have had to make that decision. you should never have been put in such a terrible place. a judge shouldn't be able to order the care of a child like that when his prognosis was so poor.

    i'm so, so, so sorry that you had to make those choices jen. it never should have happened. but you made your choices with grace and love. aiden would be proud.

    xxxx

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  13. Such a terrible decision to have to make, even when it is the right one, I know I would have done the very same thing and prevented my baby from suffering. So sorry you had to make any choices at all.

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  14. My heart is just aching for you. Such a terrible, heart-wrenching decision. People will never understand unless they have been through it, or something close to it, themselves. I would have made the same decision. I wouldn't have been able to stand seeing my baby suffer either.

    You are amazing and strong and I know Aiden could feel how much you love him.

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  15. I've just stumbled onto your blog from Misfits blog, and read Aiden's story. I'm so very sorry for all that you had to go through. You made the most difficult decision you could ever have to make, and you made it out of love. Aiden and Kira are very lucky indeed to have such a loving and compassionate mother.

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  16. I just stumbled across your blog- god I'm so, so very sorry. I'm Hindu, and that religion has a philosophy that the body is no more than a garment for the soul. My one, overwhelming prayer in all this is that any child I have gets a good dress with no defects. Life is hard/challenging enough when you are physically healthy, I could not want anybody I love trapped in a body which would inflict pain and difficulty on them forever.

    My second pregnancy loss turned out to be Turners syndrome, where the X chromosome is missing. When I found out, I just sent up a very heartfelt thank you that I had been spared having to make the decision for myself.

    You are so very brave, and you did absolutely the right thing for Aiden.

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  17. I have just found your blog through Misfit and I am at work, sobbing at my desk. I am so sorry that you and your husband and poor sweet Aiden had to endure this. I am so 100% absolutely pro choice in this situation. I cannot imagine how anyone can judge a situation of this magnitude until they are in the position to have to make the decision. I am so sorry you were in this position but please know that I don't judge you for making it. I judge the people that blindly judge. Damn them! You are incredibly brave and you did the right thing by yourself and your family. Don't ever doubt that.

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