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This was so touching. Thank you for giving us a window into your experience.
posted by : MomofBeans on 10/13/2008 at 10:52 AM Flag For Abuse
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Good article. I can relate very well to your harrowing experience at the ultrasound. So many techs have zero bedside manner - Someone needs to train them to remember that there's a feeling, often scared (or at least anxious) human being under their gooey wand. At the u/s when I learned that my son had a potentially lethal condition, the tech (and the doc!) were very cold, clinical and abrupt. It was awful. I'm so glad your daughter is thriving today - you certainly went through the ringer... I wish you all well.
posted by : BBBGMOM on 10/13/2008 at 12:37 PM Flag For Abuse
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P.S. - I just noticed that the little bar that shows the URL on my computer says, "Bad Parent: Choosing (a) Life" - Ummm... Editors/Webmasters might want to fix that!!!!!
posted by : BBBGMOM on 10/13/2008 at 12:55 PM Flag For Abuse
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Wow. You are so much braver than I am. When I got the blood test results and ultrasound results that my baby had a 1:14 chance of having Down syndrome (or even worse, a much higher than average risk of the fatal defect, Trisomy 18), I just HAD to have the amnio. I was a wreck until I got the test result showing that all was completely normal; then I could go on with the remaining months of pregnancy in relative peace. I think my stress at not knowing would have affected my whole outlook on the pregnancy, not to mention the stress hormones impacting the baby.
Although I made a different choice than you did, I was very moved by your testimonial, and thank you for your honesty and courage to tell your story.
posted by : mom of 2 on 10/13/2008 at 1:32 PM Flag For Abuse
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Some ultrasound techs have horrendous bedside manner. For my second child, the tech kept printing out images and saying, "I need to go check something with the doctor." Then she would disappear for 10 minutes, then come back and take more images, print them, and check with the doctor again. We were getting increasingly panicked.
Finally, we asked what was going on, and the tech said she was just having a hard time getting a good picture of the heart because my daughter was wiggling around too much. Why didn't she just say exactly that?
posted by : chyna823 on 10/13/2008 at 7:18 PM Flag For Abuse
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Wow, I wish I could have read this a few months ago when I was pregnant with my second daughter. We went through the same thing and were given the same odds. I wish they had never told me about that marker. I spent my whole pregnancy worrying about what it could mean for our family, feeling pressured to go through with further testing to know for sure. I had also declined the blood screening early on and then afterward the amnio because I really didn't want to know if there was a chance of there being anything wrong. I was only 21 and didn't want to risk miscarrying from the amnio and we were keeping her either way.
Thankfully our little girl was born healthy and it's all just a bad dream, though it has made me never want to have any more children. Thanks so much for sharing!
posted by : jazzysykes on 10/13/2008 at 11:37 PM Flag For Abuse
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What a beautifully told story--the first one I have really enjoyed on Babble for a while.
My daughter was born with a complex congenital heart defect that required open-hear surgery (and she had reflux on top of that, too). If we had known, I wouldn't have had to drive three hours 48 hours after giving birth for the diagnosis, but then again I might have worried the rest of the pregnancy and ended up with a c-section. Sometimes it is hard to decide whether it is better to know or not.
posted by : CaliMama on 10/14/2008 at 4:43 PM Flag For Abuse
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How great...she's all okay now! Thanks for writing this touching article.
posted by : mrb on 10/14/2008 at 4:44 PM Flag For Abuse
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Wow, what a story. Pregnant with my second, they called and said my blood test was abnormal and I'd need a more detailed Ultrasound. We didn't find out until that appointment that he could've had a spinal defect..I'm soooo glad they didnt' tell me that sooner - it would've worried me to death.
Reading about sick children and struggling families makes me so thankful - really puts things in perspective. I'm so happy this one had a happy ending. I love that last line.
http://heyyourememberme.blogspot.com
posted by : that girl on 10/14/2008 at 5:04 PM Flag For Abuse
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Everyone loves stories that over-dramatize how evil medical professionals are! Sonographers often cannot legally give out results. This would be practicing medicine without a license. Not saying they all have great bedside matter, but they're doing their job. Try doing your job while everyone treats you like you're only there to provide them with entertainment or acts as if they're an expert in your profession (or with a screaming 1 year old in the room who doesn't care or understand and would be better left at home).
That said... I'm glad everything turned out well in the end. Maybe it's a regional thing, but it's not uncommon at all to decline the quad screen. I also declined it. Ultrasound detects half of all birth defects anyway--if you're being scanned at a good facility (sounds like the author might not have been.)
posted by : MeanSonoTech on 10/14/2008 at 6:53 PM Flag For Abuse
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Interesting journey.
On a note it is no longer Down's Syndrome or Down's. It has been changed to Down Syndrome.
posted by : asrai on 10/14/2008 at 11:29 PM Flag For Abuse
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the title is completely misleading, nobody said your child would have Down's, just that it was possible.
posted by : maggie9467 on 10/15/2008 at 10:06 AM Flag For Abuse
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This is such a beautiful story. I am so impressed with you.
Love,
Andrea
posted by : andreaandrea on 10/15/2008 at 10:23 AM Flag For Abuse
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i also was told my baby had an EIF with no other abnormalities on US and there was an association with down syndrome, BUT my OB said the literature was not great and we did some of our own research and it really is interesting that they even mention it. we also never mentioned it to anyone and our daughter was born completely healthy. towards the end of my pregnancy, i wanted to know if she had this EIF, was there a cardiac abnormality that they would work up when she was born, and we were told no. i'm still not sure what it all means in our case, i think it lead to a lot of sleepless nights.
posted by : me too on 10/15/2008 at 11:17 AM Flag For Abuse
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What impressed me most about your story is the wonderful and calm way in which your Doctor discussed the test results with you. He is one in a million.
posted by : 2under2 on 10/15/2008 at 11:57 AM Flag For Abuse
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Mean Sono Tech--The problem is not that she expected the tech to diagnose, but rather that she was treated as if she weren't even there. If the tech is not allowed to diagnose, then he or she should just call in the doctor or hand the information to the doctor, not say:
"The results from your blood test screening — all normal?" he asked.
"We didn't have the blood screening," I said.
He looked at me in disbelief. "You didn't have the test?"
Please remember that even though this is just a day's work for the medical professionals and support staff, this is a wondrous, special, and very rare event in the life of the parents and the family.
As far as a one year old...you just don't know until you bring the kid. Mine was great with it and it helped her understand she had a little brother on the way. I had Dad and Grandma along just in case she reacted poorly--I would not have brought her if I had to go alone.
posted by : CaliMama on 10/15/2008 at 12:52 PM Flag For Abuse
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I remember the kind and caring songram tech and the radiologist who were with me when they found out that my baby had died in utero. It was a complete shock to us all. Routine ultrasound at 18 weeks. No heart beat. The tech quickly turned the screen away so I could not see the baby as she looked and looked very quietly. I asked her if something was wrong and she said she was not sure. She went to get the radiologist after that. The tech held my hand as the doctor looked for the heartbeat. She brought me tissues and squeezed my hand and looked into my eyes and said, "I am so sorry." after the doctor told me there was no heart beat. They called my husband for me and my OB. The radiologist hugged me before she left and gave me her condolences. I was out of my mind with shock and grief as it was my first pregnancy. Before I left the tech asked if I wanted to see the baby and if I wanted a photo. I said yes. That meant so much to me.
posted by : Alice on 10/15/2008 at 4:21 PM Flag For Abuse
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I am genuinely in awe of people who have the emotional strength to chose to bring a child into the world with a life long disability. I have found raising young children who are healthy and happy to be a full (and beautiful challenge) and I honestly can't fathom the additional challenges of raising a child with down's syndrom. I am relieved to hear that your daughter has turned out all right. I guess part of the difference between my outlook and some others is that I don't have a moral problem with abortion in these cases. But I respect the view of those who do, and am humbled by their bravery (even if it's just a categorical response to religious instruction for some).
posted by : humbled on 10/16/2008 at 9:15 AM Flag For Abuse
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From the symptom's of Liddy's that you describe (heart condition, kidney issues at birth, reflux, weight issues), it sounds like she might have Noonan Syndrome, many of the genetic tests for which have just been developed in the past few years. You may want to have her tested by a geneticist -- it's non-invasive (a cheek swab), and it may be helpful to have this diagnosis in treating these and other issues that may arise. With best wishes...
posted by : momx2 on 10/16/2008 at 10:27 AM Flag For Abuse
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I am 37 and pregnant (29 weeks) with our second child. I opted out of all genetic pre-screening because it wouldn't have changed our decision to have this baby, and I couldn't see putting myself and my husband through the uncertainty that these tests create due to their high rate of false positives.
You are to be commended for your strength and perserverance through the long months.
posted by : katydidmama on 10/16/2008 at 10:29 AM Flag For Abuse
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Great story, and great happy ending.
posted by : EG on 10/16/2008 at 11:31 AM Flag For Abuse
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My 11 yr. old son has Ds (we knew prenatally)...we also have two daughters 3 & 5. Our son was the easiest baby in the world!! Our 'typical' 5 year old daughter...the toughest. She had reflux, cried all the time, never slept - and continues to challenge us daily at every turn. We love/adore all three of our children...and can't imagine our family without them. My point is that your story confirms that doctors and test can't reveal everything. I'm amazed there are still those who put all of their faith in statistics.
posted by : momtothree on 10/17/2008 at 8:53 AM Flag For Abuse
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it still sounds like you have no idea about down syndrome, if you are trying to say that childen who have down syndrome are all unhealthy.
my daughter has down syndrome and she extremely healthy and easy to raise. she has , so far, had only one cold! that's it! there has been no struggle or difficulty with her.
so i agree, tests really mean nothing when it comes to what kind of child your child will be.
you can have a typical child who is very sickly or a child with down syndrome who is very healthy.
tests like those just trick people into thinking they have some sort of control over it all. there is no control. life is going to give you what it is going to give you. parenting is risky business. there are no guarantees for the perfect child, as you found out.
posted by : anavoog on 10/17/2008 at 10:26 AM Flag For Abuse
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Very good article. We did all the blood tests and they came out normal. At the 20 week us they saw CPC's - cysts on the brain that are also a very unreliable marker. the tech ran out of the room w/o saying a word to us. she came back in just to say we had to come back in a few hours for a more detailed us. we were hysterical. no idea what was going on or what to expect. aftr the scond us a dr came in to tell us what he saw and what it meant and gave us our options. although we would have aborted, the chances were so low that we opted not to have the amnio. well i proceeded to stress and have anxiety attacks over our decision for the remainder of my pregnancy. we had us every 6 weeks for the rest of the pregnancy and they all showed she was normaml. that was not much help although provided temporary relief every time. my advice, get the amnio and aviod the worry of the unknown. ps 1 year later our daughter is amazingly intelligent with no problems or defects.
posted by : es on 10/29/2008 at 1:47 PM Flag For Abuse
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At the 12 week screening my numbers came back that we were 1:122 risk for downs syndrome...at my age 27 it should be 1:10000....still less than 1 percent but I wondered why...I was hysterical. If I didn't have the amnio I would have stressed and made myself sick and possibly cause preterm labor from the stress of it all. I did the amnio at 15 weeks (those 3 weeks of waiting were horrible and I totally detached myself from the pregnancy)...The results came out that we had a healthy baby. My advice is to get the amnio...Whether you would have an abortion or not. If you would not have an abortion it would be good to prepare yourselves and learn about raising children w/ downs and the health complications that possibly come with it. After we got back the results I was able to 'feel pregnant' again and enjoy the most beautiful experience without being worried!
PS. The 1 in 200 risk in complications from an amnio doesn't mean that 1 in 200 babies die...it could just be a complication that is easily fixed. Also from what my dr says ( we are in NYC with the best hospitals and drs. the published risk 1:200 is not the real risk...he said in his 10 years practicing he never saw 1 complication..
posted by : jamielevine on 11/17/2008 at 5:08 PM Flag For Abuse
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What a refreshing point-of-view in a mainstream parenting media outlet. Karen, your honesty and courage is as beautiful as your little girl and the life you gave her. May it inspire others to choose life as well.
posted by : kmwicker on 11/19/2008 at 3:35 PM Flag For Abuse
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i loved this article!Thank you for being honest and open about what must have been a tender experience...I've been pregnant eight times (lost one baby to early miscarriage, have seven children) and i've gradually opted out of mainstream medical care, just because it felt like harassment to have to continually defend my choices and explain that no, abortion really would not be an option for me.i think maybe male doctors or even female ones who have not had a child yet, have a hard time seeing what is going on inside pregnant women. i can't really imagine being pro abortion- but i esp can't imagine being pregnant and being able to still feel as though i were pro abortion, or to abort my own child. i think that's something that is just deeply in bred in all women, regardless of how you think of yourself...it's easy i think to speak about theories when you are young and it's not you or your own baby, but when it's your own baby and your own life, you tend to think a little deeper... and those age old taboos are there for a reason...
posted by : mamazee73 on 5/28/2009 at 3:17 PM Flag For Abuse
