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Thursday, May 17, 2012

Another Perspective

I originally posted this in 2006 (wow, 6 years ago!) but it was when I first started blogging and didn't really have any readers. I'm republishing it now because of a post over at A Perfect Lily - Don't Do It. Patti had a visitor to her blog who arrived by searching for "positive outcomes of aborting a child with Down syndrome."

I don't see how there can be a 'positive' outcome in that situation. First there is a life, then there isn't.

But I've never been in that situation. I've never aborted a child because of Down syndrome. So I can't speak on that experience either positively or negatively. Yet I do have the words from someone who has that experience. I found this post on a well-known community forum that has numerous message boards relating to the topic of pregnancy and parenting. One such board is the 'termination for medical reasons' board.

I came across this heartfelt post from a woman who terminated due to being prenatally diagnosed with Down syndrome. It's pretty eye-opening to read from someone who has been there ... and deeply regrets her decision. She realizes all those myths and things she feared were simply not true.

This is the post I copied six years ago...

"I have lurked here for years, and although my story may not be welcomed with open arms, I feel compelled to share it none-the-less. Like many of you, I received a pre-natal diagnosis that our precious baby had Down syndrome and a heart defect. It was completely unexpected and devastating, obviously. Like many of you, my first concern was for my daughter. What would having a sibling with special needs mean for her future? I didn’t want to burden her with a brother who would never be anything but a drain on our family. We didn’t have the resources of money, time, family support, etc. to be good parents to my daughter and a child with Down syndrome. I didn’t want to bring a child into the world only to suffer. These feelings were substantiated by the medical professionals involved in my care. They universally agreed that terminating was the right decision. So we made the choice, and I had the procedure. My grief was overwhelming.

About one year after the termination, I was again pregnant. I thought that perhaps we could finally move past the pain of losing our baby. The pregnancy was smooth, an amnio proved that the baby was healthy and that there were no chromosomal abnormalities. Everything seemed great. But at 22 weeks I went into labor, and the drs. were only able to stop it for a few weeks. My precious son was born at 25 weeks due to incompetent cervix, and both my OB and the perinatologist agreed that it was a direct result of the termination procedure. There was no other explanation. After months in the NICU, too many complications to recount, various surgeries and painful procedures, my son finally came home. And I was reminded everyday of the fact that my baby’s health issues and delays, his numerous special needs, were a direct result of trying to prevent having a baby with special needs. The irony continues to astound me.

But what I have learned in the 5 years since he was born amazes me more. I have learned that I do have the strength to raise this child. That yes, the drs. appts. and therapies which at the beginning seemed all encompassing, fade into the past as he grows older. I have seen my daughter grow beautifully into a compassionate and loving person. The experience of having a brother with special needs has exposed her to something that I always said I would teach my children. That different isn’t bad…that what makes a person beautiful isn’t what you can see with your eyes. In the NICU, and since then at the children’s hospital, in specialists’ offices, at the early intervention center, in school…I have seen that children with Down syndrome, and other special needs are not burdens to their parents. These families have challenges, sure, but they also have joy. Their lives are more “normal” than not. I have seen the pride on parents faces (and felt it myself) when a goal that comes easily to others is finally mastered. I have heard stories and witnessed myself marriages and families strengthened and enriched. I have seen that kids with Down syndrome, one of whom is now my son’s best friend, are absolutely not suffering. My son’s friend runs and laughs and plays, tells jokes, and is reading. He loves freely and fully. He had the same heart defect as the baby I terminated…and after surgery he was out of the hospital in a week and has never had any other complications.

I am not sharing my thoughts to cause pain to any members of this board. But I have nowhere to go with the guilt and pain I feel for the decision I made. I do not just regret being put in the situation; I deeply, and painfully, regret the choice that I made. And I think that even though the majority of people who post here seem not to struggle with that feeling, I know that I can’t be alone. I wish that I would have actually talked to parents of children with Down syndrome. Because one thing I know for sure—as capable and helpful as my son’s drs. and therapists are, not one of them can really know what it is like to be his parent, and to see the love that he brings to our family. My son’s needs in fact are greater and more complicated than most of the children with Down syndrome that I have encountered, but his life still has value. I never would have imagined myself in this position…and I didn’t think that I, or my marriage, or my daughter, could come out stronger for it. But we have. And now after the time I have spent with these children and their families, I don’t at all consider them fanatics. But advocates for the kids who have brought so much love to their lives. And I can also say unequivocally that these children and adults with Down syndrome “have a life”. As far as what NICU nurses and neonatologists would advise, after practically living in the NICU for over 3 months, I have no doubt what they would, and do say…Down syndrome is nothing compared to what so many families experience. These children can and do have a great quality of life and contribute to their families and communities, and are not considered a burden even by their adult siblings after the parents are gone.

I am not posting this to cause pain to anyone on this board. But I also cannot just sit back and not express my views on this subject. I do not judge anyone here, including myself…I know that we all made the best possible choices with the information we had. But I have lived both sides of this issue. I have terminated for T21 and now am raising a child with special needs. I wish I had known then what I know now."

And I just wanted to say this unknown poster, "Thank you."

26 comments:

Becca said...

Absolutely heartbreaking. Thank you for re-posting.

I was away from my computer all day yesterday and missed Patti's post - heading over there now...

Meriah said...

What a powerful post- and thank you so much for reposting! I am going to share it on my blog's fb page

Team Lando said...

Wow. Thanks to this poster for sharing, and to you for saving it all those years ago.

Tara said...

Wow! That is so powerful! I lurk on that board from time to time. I can only imagine what the comments to her post were.

mummalove said...

Wow. That IS a powerful post. Thank you for reposting. I hope that other people who are going through that decision making process get to read that.

Kelley said...

Wow. I wish I could find her and hug her right now.

Kristi said...

WOW! Thanks for reporting this! Very very powerful... And I wish I could give her a hug also....my heart is aching for her!

Anonymous said...

Wow, that is really a wonderful post. I am a perinatologist, actually in your general area, and I have witnessed many parents struggle with these decisions. I try really hard not to judge, but I can't help but be disappointed every time I hear of a patient's decision to terminate, especially when the termination is for Down syndrome. I enjoy your blog. Your kids are beautiful!

teal915 said...

I've talked with a couple people who have had abortions and regretted it. Thanks for posting this. What a great way to hear from someone who has been through it.

Diana said...

Disclaimer.. I didn't read your post yet! I want to read when I have more time. But, I felt I had to pop over here and tell you something since this showed up on Facebook. When I was pregnant with my little girl back in 2009, this blog is one of the first that I found when I was Googling Down syndrome. Your beautiful little girl's face, and your powerful words, literally got me through! I am in the process of documenting my experience, and if you don't mind, I wanted to give props to your blog in my account! I thank God for women like you, and Patti and Missy from BBC who give such amazing support to women like I was, who are facing the unknown. Can't wait to catch up & read the latest!

my family said...

wow what a perspective how brave of her to share

Pam said...

Thank you for being brave. I wonder how many you will help that you never could know. But God knows. And he honors our humble hearts.

Anonymous said...

Thanks for re-sharing this testimony. It is powerful!! :)

Love mom

Leah said...

Very powerful indeed.

Naomi Rice said...

Hi I am pattis daughter in law and that post was heart breaking and yet extremely powerful. I think of my sister with special needs and my sister in law (lily) with down Syndrome and I cannot imagine my life without them. They make me a more unselfish person everyday and bring light to my life. That post is very ironic yet very eye opening to how abortions are not only emotionally devastating but can also be physically devastating.

Melissa said...

Love this post. So, so powerful!

Kellan's momma said...

Thank you or sharing. Heartbreaking and powerful.

Christa aka The BabbyMama said...

What's unfortunate is that the termination procedure is the same as the procedure for missed miscarriage. So anyone who's had a miscarriage that required a D&E faces the same chance that it will lead to future premature birth. Don't mothers feel guilty enough?

Laura said...

Wow Michelle! I just loved this post. I missed in when you reposted back in May because we were in Germany. I was just lurking on that board last night and felt so discouraged. To read this today brought a smile back to my face!

Brenda said...

Thank you for this post! I was told after our DS daughter was born that the next pregnancy I should abort if it is DS. I smiled at the well meaning doctor and said, "I wouldn't abort." Then I left his office and turned my anger into this poem. Hope you enjoy it. :0) http://masterpiecequilts.com/in-his-image-a-poem-for-emily

Stephanie Bissol said...

WOW! Thanks for re-posting. What powerful words!

Not a Perfect Mom said...

after I had Brooke I found out, through my own research, that most women that aborted their babies with Ds went on to have therapy because they regretted their decision....and I wondered why the doctors that urged me to end Brooke's life didn't tell me that part...
Makes me so crazy

Mauzy said...

Very powerful and I want to share on my very stagnant blog. Thank you. Hugs!

Hello! I'm Kate. said...

WOW! Absolutely amazing!

I hope beyond hope that she has found peace & healing. There are some great groups out there for women grieving their abortion (http://hopeafterabortion.com/ being one of them.)

What a brave woman to tell the story!

I have no idea how I ended up on your blog, but your daughter is beautiful!

Molly Morris said...

I read this post on clinicquotes.com and followed the link here. Great post. I'm so proud of this mama for embracing such a direct message from the Lord. Many of us will make tragic mistakes in our lives...its how we overcome them that defines us.

Anonymous said...

Thank you for such a heart wrenching read. And although I am a parent of a Special Needs Daughter, And she continues to teach others how to love one another as if we are all God's Children. I can feel your pain for your child that was not brought into this world. But you must remember that you will be together again with her some day. That is God's final grace for mistakes we make. And maybe she was the Angle that saved your Son's life...