Saturday, July 09, 2005

My dirty little secret

The recent events over on Roxanne's blog have led me to wonder...have I been deceiving you? I guess that if by definition that omission of specific facts is deception; then yes, I have led you astray. The truth is that I have never truly spoken in this blog of the one thing that is always weighing on my mind. in January, my husband and I made the heart breaking choice to terminate our pregnancy. I hate that word...terminate. I like to think of it as induction or delivery, the truth is that we made the choice to end the life of our child. This is the hardest decision that I have ever had to make, but please keep reading. It has become clear that in reading the comments on A Different Child, that those of you with a natural loss view this as different. Somehow, I fit into my own category. I guess that technically that is true. In your eyes, I may not have lost my baby, I chose his destiny. I guess this is why I have omitted it up until this time. In my experience since this has all happened to us, I have realized that people tend to judge you before they know the whole story. As a result, we chose to just tell people in our lives that we "lost" the baby. No description attached, really not many questions asked or answered. It was easier that way, and my husband and I were left to wrestle with our inner demons and guilt on our own.

We made the decision to induce labor at 20 weeks, 5 days. But the truth is that we made that decision out of love. We had the standard quad screen test done at 16 1/2 weeks, got the positive results for a neural tube defect during our 17th week. We went to UVA for a level II ultrasound - honestly the best 90 minutes of my life were during that ultrasound. We innocently and naively watched our baby move and kick, we fell in love. We gushed about how he looked and what he was going to be one day. Only to be told at the end of the ultrasound by the high risk doc that the cleft palate that our son suffered from was the least of our concerns. They originally thought he suffered from Trisomy 13. I'm not sure what you know about Trisomy 13, but if you google it, you can imagine our devastation. It seems that during the ultrasound, the doctors discovered that Isaac was missing half of his brain (anencephaly) and the half that he did have was so scrambled that the doc and technician couldn't find anything recognizable. This was difficult to hear because to me he looked perfect. I am in the field of orthopedics, what I know is muscles and bones. I've taken gross anatomy, I know what the body is supposed to look like. He had long legs and arms, a perfect little beating heart. His kidneys and spine all looked great. We had a hard time seeing his face on ultrasound, but the docs could tell that there were abnormalities. Of course, I am not familiar with what a brain is supposed to look like on ultrasound. I had no idea that anything was wrong. After the doctor talked to us, he advised we get an amnio. We did the procedure right away. A week later 18.5 weeks of pregnancy, the results came back normal. Our baby did not have a chromosome deformity, so the question is what was wrong with him? I hoped nothing. We went back during our 19th week for another level II ultrasound. This time, the baby's head was in a better position and we could see the face...the docs could also get a better view of the brain. It's weird, but this ultrasound gave us one more time to see our baby alive and in some ways to say goodbye to him. The results were not good, the brain condition was as bad or worse than they had thought two weeks before, he had severe cleft palate. His eyes were offset, he was missing a nasal bone and complete upper lip. The part of his brain that was affected was his entire cerebral coretex. He would be incapable of language understanding and development, he would be incapable of emotion, he would have no motor skills. He could be a vegetable. The prognosis was not good.

The doctors said that we could choose to try to carry the baby to term, but that the baby would not improve. Not only that, but the baby would likely self-abort before full term. If the baby was born, he would only live for a few minutes or hours; he would likely be in pain. So, let me stop and ask you right now, what would you do? Given that all you had dreamed and hoped for your baby had been shattered, would you carry your baby to term? We chose to induce labor. Out of love for this child, we knew that we had to make the difficult decision for the future of our child. We actually made the decision to induce over D&E so that an autopsy could be performed. I dreaded nothing more than delivering my dead son and having to hold him in that condition. Honestly, I feared what he would look like. I had seen the pictures of Trisomy 13 online, I am a very visual person. I feared that his image would be a negative impact.

Now, after delivering him, I know that he was perfect. I will never second guess the decision that we made. We were able to meet him, hold him, name him, spend time with him, have him blessed. It allowed my husband to bond with a son that he had little connection with up until that time - it's hard for the husbands early in pregnancy. We kept him for over four hours. My mom, DH's dad, and my sister all got to hold him. He was blessed by the chaplain. He was deformed, yes. I now know that he never would have made it in life. I'm at peace with our decision to let him be born in a way that we were able to come to terms with. He died at peace, a very much loved little boy. Does that make the decision any easier? no. Do I have regrets? Yes, I wish that I had a healthy little boy now. Do I rethink all that happened each and every day? Yes.

I guess that I write this to clear the air. Roxanne, I know that you didn't mean to offend me. It wasn't you who offended me, I just needed to say my piece to everyone out there. They needed to hear the story from this side of the fence. I'm not mad, actually I'm glad to have this opportunity to share. If any of you judge me for the decisions we have made, I'm sorry for you. We lost our little boy, I feel that emptiness every day...there is no denying that. The gates are open, feel free to ask me any questions you have about this. I have cleared the air and would prefer that you ask questions, rather than judge me.

10 comments:

Susie said...

Oh, honey. Thank you for sharing this. I think about it every day, the possibility of having to make this heartbreaking decision. I am so, so sorry for your loss. But I know that I would have done the same thing.

Kat said...

Oh Holly. I'm so very sorry for what you've been through.

As someone who carries the translocation which puts me at a high (very high) risk of my child having Trisomy 13, I can so relate to everything you said. And once recently I made the mistake of googling trisomy 13 again, and it's truly the stuff of my nightmares. There's no doubt in my mind what I would do in that situation.

Jillian said...

Holly, you are such a courageous woman and hearing your story truly humbles me. You have written about a love so strong that you would do what you did. And only you truly know everything that choices entails, day in and day out for you.

I can honestly say that in my experience, the one thing I have always been grateful for, regardless of my pain, is that it was not my decision. I never blamed God for taking them, just was pleased that it was not me having to choose. I cannot imagine doing anything differently given the same circumstances as you faced.

Peace is what gets you through in the end. Knowing that you could not have done anything else in good conscience, no matter how awful the choice was. I am so sorry for your loss and that you have had to relive it in such detail here. I hope it has lightened your load a little to share. ((HUGS))

Roxanne said...

Holly,
I just want to stress again that I SOOOO SORRY if I in any way made you feel judged or misunderstood. I want to say again that if I had been in your shoes I would have made the exact same decision, although I don't actually know if I would have had the courage to see and hold my baby. Probably not. I think you are a very brave woman.

I don't see any measurable difference between what you went through and what I went through, except that you were faced with having to make a painful choice and I was not. Your precious babe did not have a chance at leading any sort of life of quality. You made the kind choice.

What I was reacting to, which with more thought I have realized is not right anyway, was a parent's decision to terminate over mild mental retardation. Not a severe birth defect. But even this is something that I should not judge because god forbid I would have to find that information out. No one wants to hear that news. And you were right to say that I didn't know the whole story. I don't. My post was not meant to be harsh or critical, but merely to examine why that felt strange to me.

Also, I didn't say this on my blog, but part of why I felt my support group might not be understanding is because it's clear that many women in my group are very religious. It seems from the stories I've read online that many very religious women do choose to carry to term even in cases where the prognosis is fatal. I have no opinion on this either way, but I wondered if they would.

So please accept my apologies again. I would just hate to think that I made this even MORE painful for you. I don't think that you have any "dirty little secret." I think you were brave and did the best thing you could for your baby.

Anna said...

Oh, Holly...Even as someone who is a Christian and very pro-life, I can certainly understand the decision you made and I would NEVER judge you for that. Its just not my place. My place (I feel) is just to listen and try to be a friend. I wasn't involved in the debate on Roxanne's blog, but I just want you to know for sure that I consider you a sister in all this and I don't judge you or think of you any differently than I ever have. I am so sorry for what you have been through. Please know that there are so many women out here in blogland who support & love you!

Julie said...

Holly, I want to thank you for sharing your story with us. I know that was very hard for you to do, but now I feel like I know Issac so much better.

I am going to be honest here. I do not know what I would have done in your situation. But to me your situation is VERY different then the one that Roxanne brought up on her blog. I do NOT view terminating because your child has downs the same thing as carrying a baby to full term and all of a sudden having him taken from you. I would have taken Caleb ANY way he was given to me. I can say that I KNOW I would. My love for him is unconditional, and honestly, I would have taken him as a special needs child any day then to be on this earth without him. With that being said, I do NOT know what I would have done if I had been told that no matter what, my son was going to die. I don't know what I would have done with being faced with that decision. I just honestly cannot look at terminating a pregnancy because the baby has a defect as something that ANYONE should do. I can't agree with it, and I can't say that they are in the same situation as me. I know that they still grieve and go through horrible guilt, but to me it's very different.

I know that took so much for you to make the decision you did. It was a mother making a decision that was right for HER family, and I don't fault you for that at all. I would never judge you for making that descision, I am just here to listen and hopefully be able to give some decent advise once in awhile. ((((((((hugs))))))))

Amanda said...

Oh Holly. I'm in tears as I write this and I can only imagine what you and your husband have been through. You have made me open my eyes to something I had only briefly thought of. My heart is so full of love and admiration for what you did for son, as hard as it was, to make sure he is at peace.

I'm so sorry and I wish I could give you the biggest hug of all.

Catherine said...

Holly, you have entered into the realm of true mommy-hood. For some reason, women have a need to compare and judge every choice we make as mothers...natural or medicated birth...breast or bottle...disposable or cloth...circ or not...

You name it, there will be someone who will agree with you...but there will also be someone out there who will disagree with you. Take it for what it's worth...their opinion and a dollar will get you a cheap cup of coffee.

I admire your strength and your honesty. And I'm here lurking on your blog because I know you understand the heartache of losing a baby. That understanding helps me. Are our circumstances exactly the same? no. But nobody's circumstances are EXACTLY the same...ever.

And our pain may be different. But this isn't a contest and you don't win a prize for having a "worse" pain. My pain is no better or worse than yours...just different. And even though we may be different...I hope that I can provide you a tiny portion of the support you have provided me by sharing your words about your loss, grief, and healing.

MB said...

Holly, I'm so sorry. I'm sorry you were faced with such a horrible choice. I know we would have done the same. Thank you for being brave enough to share your story.

M

Nik said...

I have been crying as I read your story. I just don't understand why good people have to be even in a situation where they would have to make a choice like yours.

You did what was best for you and your family. Thank goodness you had the right to choose.

Good luck to you