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A Mom Confronts the Possibility of Down Syndrome
March 12, 2009 at 7:06 AM by Cafe Melisa - Comments (21)
I remember holding my breath through so many tests and procedures when I was pregnant, just hoping this wouldn't be the time I'd hear that something was wrong.
So I really felt for Nola (naschaefer) when I read her post in Pregnancy about how her 20-week ultrasound showed soft signs of Down Syndrome. She had to decide if she wanted additional tests and was looking for some support from moms in the meantime. I talked to her about the experience.
Nola is 26 and her husband, Chris, is 30. They live in Florence, Kentucky and this Nola's first pregnancy.
Tell me a little bit about yourself and what happened at your 20 week ultrasound.
I was involved in a car accident a little over two years ago. I was hit head-on on the highway and broke most of my major bones -- legs, hip, arms, etc.
So, I wasn't even sure if it was OK for me to get pregnant but my doctor gave me the green light. I was already a wreck about this pregnancy because it's hard for me to believe that something so wonderful has happened to me in spite of all the bad luck.
I was worried about the 20 week ultrasound even before I went -- I just knew they were going to say something scary. They said they saw two soft markers for Down Syndrome. The first was a thickening at the back of the neck and the second was a bright spot on the heart. I freaked out.
They said you can do nothing, you can do the quad screen, or you can do an amnio. I opted for the amnio. I wanted to know unequivocally what the situation was. Also, I'm a nursing major in college and I know the risk of a problem with the amnio is low. Still, I was scared.
Did the doctor advise you to do additional testing?
They left it up to me. I'm just the type of person who needs to be fully informed to be able to deal with the situation. I wouldn't enjoy the rest of my pregnancy not knowing for sure, and worrying.
Have you gotten the results from the amnio?
The results came back and everything is fine! But I'm upset for myself and all the other women who hear this kind of news every day and freak out.
So, I called around and did some research. Basically this is what I was told by one doctor: "the technology is far too advanced for our minimal knowledge of it."
Over 50% of babies born with Down Syndrome never show soft markers on an ultrasound, and many babies have soft markers but once tested with an amnio don't have any chromosomal issues.
This is a lot to process emotionally. How are you feeling about things?
I'm frustrated by the lack of real, usable data and facts for moms.
Did you and your husband discuss how you would handle the information from the amnio?
It would have been a painful and difficult choice -- I already love my baby so much. But, for me, the thought was this: We would love him no matter what, but what happens when we're gone?
My sister had a condition that required state care for three years and horrible things happened to her. But God answered my prayers and everything is fine.
What, if anything, made you feel better during this time?
Talking, talking, talking -- and not researching too much online. Hugging my husband and holding my belly.
What would you tell other moms in a similar situation?
Lean on other people for support -- women are strong alone, but even stronger together. Lean on your sisters, mothers, friends, whoever you have. And pray -- pray for your baby and for God to quiet your mind. I know it sounds crazy, but it worked for me. Every morning I woke up a little less scared than the night before.
This is an incredibly difficult and scary topic, and one that other moms will inevitably confront, so thanks to naschaefer for being so brave to share her honest thoughts with us. Please be constructive -- your opinions are welcome, but any bashing will be deleted.
Have you encountered any situations that led to additional testing? Do you think we have too many tests while pregnant? Share your thoughts here.
FILED UNDER: 2nd trimester, complications, doctor visits, pregnancy health
Comments:
I'm glad they are having a healthy baby, but WOW. First of all, a nursing major who doesn't even know that it is "amNIo", not "amINo". And she would have aborted after 20 weeks? That just disgusts me. I do think it is sad that the Down Syndrome test is so unreliable and yet they continue to do it and put many women through a risky and unnecessary amnio.
Well, first of all I have to say that I'm surprised this issue even made the daily buzz. Surely you know how controversial this will be.
I'm sure we'll all get in trouble for posting like this, but I have to agree. Someone who has gone through nursing school should know better than ANYONE else that a living, breathing baby is inside you, fully developed with the exception of some internal organs, and she still would have chosen to kill the child just because he/she *might* have Down Syndrome? Disgusting.
We also opt out of all testing for such issues in our pregnancies (I am currently pregnant w/ #4). The results of the tests are fairly inaccurate; yet I just read a statistic that a whopping 90% of women who receive a positive DS test abort their babies. How sad.
Who are we to play God? If Down Syndrome is a perfectly acceptable reason to kill our babies, what else will soon be an acceptable reason?
To answer your Qs, YES, there are far too many tests during pregnancy - many of which are never accurate. And NO, I've never encountered any issues that warranted further testing, but even if I did, my husband and I would opt out. We will love and care for our baby regardless of his/her disabilities.
I say, Walk a mile in her shoes before you throw stones........We went through the same thing, ( although it was at 11 weeks, not 20)....It was horribly stressful to go through.....not knowing, wondering if you are making the right decisions, ect........and as far as the amnio, amino, comment, I have spelled thier wrong for years........Jesus, is this English class?????????? btw,we would have ended the pregnancy as well..........It's not right for everyone........
My2J.A.P.s, that typo was mine, not naschaefer's -- purely my fault! Thank you for pointing it out. :)
How very sad that so many women suffer the emotional as well as physical aspects of all this testing when it is so unreliable. Thank goodness my kids were born long enough ago that I didn't go through this testing.
Abortion is her choice. It is her body and baby.I just wanted to get this information out there for any women who has to make a horrible choice. There are hundreds maybe even thousands of families just waiting to adopt children with down syndrome.Here is just one organization http://www.dsagc.com/ that helps find families.
All these modern machines and tests to me are a little too much. Each child is different in every way and yes some are disabled. What I have learned is that mom usually knows best. For each of my pregnancies I knew the sex and for my last, twin one I knew something was not right and sure enough, I was right. I didn't need ultrasounds to tell me the sex which I didn't get anyway and when the doctor gave me the wrong diagnosis on my disable child I was relieved, only to deliver and realize I was in the right all along. So I don't listen to any of these test results and don't put myself or my baby at risk with more tests. My greatgrandmother has a kid who wouldn't walk and she constantly massaged her and she did eventually walk and led a normal life.
Why is it a baby if you want it, but just a "pregnancy" if you don't? Why not have the baby, allow it to live and adopt? Aren't nurses charged with protecting life, not taking it? Is a child just a piece of property, that if he/she needs special care, that he/she doesn't deserve to live if you are not there for him/her?
I had monthly ultrasounds with my son because they were sure there would be some anomaly, dwarfism, downs, aspergers- the list was long- he is missing some fingers and toes- that's it. Some docs feel like they have to paint the gloom and doom, suggest abortion- sort of twisted, actually.
Abortion is no ones choice. Every innocent person deserves to live. The choice comes in getting pregnant in the first place.
I went through the same thing, except the quad test was positive for Downs Syndrome. We decided against an amnio BECAUSE the of the risk. There was a greater risk of the amnio causing a miscarriage than my son having Downs. The doctor also told us a slight thickening of the nuchal fold and calcification in the heart were ALL he saw, then went on to mention other markers that were common with Downs (that my child did not have). Thankfully we were working with an experienced maternal fetal medicine specialist. We did have other problems with the pregnancy, but my child was not born with any chromosomal abnormalities.
I won't make this about having a choice to raise a child with Downs or terminating a pregnancy. I would encourage women to do their research and know the risks before having an amnio. It's not a safe or low-risk procedure, which I feel is implied by this nursing student.
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This is exactly why I opted not to have any testing done. I did go through with the 20 week ultra sound, but they had test specifically to check for down syndrome, and I asked them not to perform them.
I knew I wouldn't have an abortion no matter if the baby had a genetic/developmental problem, so knowing about the problem would really have done nothing but upset me. I wanted the baby to be inside me for 9 carefree months, not me sitting around worrying.
xxPaulaxx Mar. 12, 2009 at 7:22 AM