My baby might have down syndrome - Mothering Forums

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Old 08-16-2005, 02:03 PM - Thread Starter
 
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Hi, I'm hoping for words of wisdom...or something. My doc talked me into having an ultrasound, and now I regret it. I'm almost 37, and was very clear I didn't want a triple screen. But during the ultrasound they saw something. I could tell the whole time there was something going on, and finally the radiologist told me the nuchal fold is in the "high normal" range. This can indicate down syndrome.
So I'm stuck worrying about exactly what I didn't want to think about. $&#%!!!! Now what? There is no question about terminating, we're having this baby no matter what. However, now my choices are to wait and worry for the next four months, or have an amnio-eek! What to do? If I know, at least I can be prepared. Do I do research now on the off chance? How do I come to any peace of mind?
If anyone has thoughts to share- the best place to go for more information, anything. I'd appreciate it.
Mary
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Old 08-16-2005, 03:24 PM
 
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Mary, unfortunately, I have no words of wisdom or good advice to impart. But, I also could not read your post and not respond. I am so sorry you, and presumably your partner are dealing with such a worrisome situation. When I was pg with my first, I did do a triple screen and it revealed a slightly greater chance than normal the baby had Down's Syndrome. So, we did one of those technical ultrasounds that are a little more precise than the regular ones. Our baby appeared to have only one possible marker for Down's--slightly short femurs. So, we worried a bit, but not a lot for the rest of the pg and the baby ended up not having Down's. What I wonder, reading your post, is if you should be comforted by the fact that only one of several possible markers was found. What did your technician or midwife or doctor say about that?

I think your situation is such a personal one that I don't feel at all qualified to comment on what you should do. In our situation, we decided not do to an amnio because we knew we would not abort, either way, and therefore we didn't want to subject our baby to the risk of being harmed during amnio. And, on the other hand, I would never judge someone who decided that they really just needed the info, to feel in control, and got the amnio.

I will hold you in thought and prayer and wish for a sense of peace for you and your family.

Emily
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Old 08-16-2005, 04:33 PM
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I wish I could offer some "been there, done that" advise, but I can't. At least not specifically related to downs. However, both of my prior pgs have shown "odd" things on the u/s. I got to worry, and subjected us to more u/s only to have normal, healthy babies. The explanation afterwards was just that u/s (particularly measurements) can vary depending on the tech. I mean, slide the mouse a tiny bit too far and suddenly you have a big head or big baby, etc. Slide it the other way and you have growth issues.

I don't know if that helps. If I were in your shoes, I would skip the amnio. And, to be completely honest, I would skip learning about downs. The reason for this is because I have read (don't know how true it is) that when people worry too much about the potential problem, that they don't bond quite as easily to their child. And with downs, I think you can learn a lot as you go.

Amy

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Old 08-16-2005, 05:41 PM
 
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I have no wisdom, but I can give you support on this one. My mom had the same thing happen to her...though she was only in her early 30's with my sister. She even had the testing that confirmed her chances of this baby having Downs as very high. This was 12 years ago, so she had the u/s and everything. She did research, prepared her heart and was at peace with whatever would come. My sister is now a healthy happy pre-teen. She did not have Downs or anything else.
A very good friend of mine discovered that her daughter in the womb had Downs. She was 33 at the time, her 2nd pregnancy. She was panicked at first. I remember spending much time with her praying and offering support or a shoulder to cry on. Once she had this baby, she never looked back. This little girl is beyond wonderful. She is truly a blessing and lights up everyones hearts. I can not express to you the joy she has brought to her family and friends.
I know that if we were in the situation, we would be prepared and feel fully blessed. I truly hope you can make peace with whatever fate holds in store for you.
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Old 08-16-2005, 09:36 PM
 
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Oh! First of all, know that everything is going to be OK either way. This is your baby and you will love him/her (did you find out?) no matter what.

I read your post before dinner and pondered it while I was eating. I'm not sure what YOU should do because it is such a personal decision. I was thinking about what I would do, though. If you want to know, keep reading. If you just want a , you've got it.

If it were me, I think I would have the chromosomal test soon but after the point where if it did cause early labor the baby would be OK (30 weeks or so?). That would give me lots of time to learn about Downs (and therapies and alternatives to therapies and diet, etc.) if that were the case. If it weren't, then I'd have way less stress on me and the baby for a good chunk of the pregnancy. Until the test, I would do my best to just love my baby and do alot of meditation and introspection about gracefully accepting life as it comes and focusing on relaxation--that's good no matter what, YK. Because someday this kid is going to be 2 years old!! :LOL

Best wishes to you and your family. Let us know how it all comes out, OK?
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Old 08-16-2005, 09:49 PM
 
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Regardless of an amnio, even if you have no futher testing at all...

Will you love your child any less? Will you change your parenting views if this is or is not true? Of course you will probably parent a downs child differently then a child who is not, but what will "KNOWING" or not knowing do for you? More added stress?
Keep in mind you were blessed with this child for a reason, regardless of why. YOU HAVE BEEN BLESSED!

You said termination is not in question. So, why stress yourself more with an amnio, stress yourself with wondering if you will or will not have a downs baby?

Just be happy and know that you have been given a beautiful gift. If you have been blessed with a child whom has special needs it is not a curse, but a true blessing!

KWIM?

Know you have been blessed either way!

Best of luck to you!
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Old 08-17-2005, 12:12 AM
 
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I am so sorry. I think I would want a higher level ultrasound to confirm, and an amnio only as a last resort. My thinking would be I want to know for sure, if the baby is Downs I can be as prepared as possible for the special challenges that await me. I would never love my baby less but would want to educate myself as much as I can before the birth.

That is pretty mainstream though! Go with your mommy gut, do as much reading as possible! This baby is perfect in God's eyes and I pray for healthy and safe delivery!
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Old 08-17-2005, 12:26 AM
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as someone who works with people with disabilities, i thought i would mention one thing -- learning that a baby has downs syndrome tells you really almost nothing about his or her disability. you will not know how severe the mental retardation may be, you will not have any idea what other disabilities and abilities your child will have (many children with ds also have specific heart defects, a good friend of mine has a child with ds who is extremely athletic). so, i'm not really sure how much more further testing could tell you beyond confirming the ds itself.

all of that said, i did have genetic testing by chorionic villi sampling myself when i was pregnant (at ages 36 and 38). funny enough, we also had the "short femur" marker but already knew it was .... just a short femur (like everyone in my family).
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Old 08-17-2005, 12:32 AM
 
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I recently found out through amnio that our baby carries a chromosomal abnormality, and I have to tell you, knowing has been the best decision for us. Yes, we were stressed out when we first learned the news. Devastated, in fact. But we've come to terms with our diagnosis and are prepared to greet our son with joyful hearts and happiness. I would much prefer to know about his problems and deal with the news now, before his birth, than to be faced with the news after he's here.

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Keep in mind you were blessed with this child for a reason, regardless of why. YOU HAVE BEEN BLESSED!
Tummy, I think every mother feels blessed by her child. But as the prospective mother of a special needs child, I have to tell you that I get a little annoyed by everyone reminding me of how "blessed" we are that our son has problems. NOBODY wants their child to have problems. EVERYONE wants a healthy baby. And to imply that a woman who might grieve because her child isn't healthy isn't appreciating her "blessing"....well, I kind of resent that.

Quote:
If you have been blessed with a child whom has special needs it is not a curse, but a true blessing!
It's not a matter of feeling cursed. It's a matter of grieving for the child you thought you were going to have....for the life you thought you were going to live. Every mother who is faced with the news that her child is "different" is entitled to that grief. No, I don't think I have been "cursed" because my child will have special needs, but I will tell you that I wish with all my heart that he could be a "normal" child. I wish I could spare him the struggles he is sure to face because of his disabilities.

dogmama, only you can make the decision about amnio. It was a very scary procedure for me, as I was terrified of miscarriage. But I am so glad we went through with it, and I'm glad I'm armed with the knowledge about my son's possible disabilities. I'm glad I have the chance to prepare for him. And FWIW, my anxiety about the amnio was 1,000 times worse than the actual procedure.

Good luck to you.
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Old 08-17-2005, 12:37 AM
 
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I went through this just 2 weeks ago so I do know how you are feeling. See my post http://www.mothering.com/discussions...d.php?t=325458 asking about amnios. I KNEW I was not going to be okay wondering for the rest of my pregnancy and other reasons stated in the post so we did choose to have the amnio.

Please keep us posted.
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Old 08-17-2005, 12:58 AM
 
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This may turn into a long post...

Also, I haven't read any of the other posts so forgive me if I repeat anything.


When I was pregnant with dd1 I was 16. I went to a clinic for care so there wasn't really one dr. to manage my care(this was before I knew of the wonders of midwives!).They asked if I wanted the *new* triple screen test, or something to that effect.

Well, I went into this pregnancy thinking that I would have every test they suggested because I wanted to make absolutly sure that everything was going to be fine.
a. never anticipating any problems and
b. never thinking about the fact that if any of these test came up with something wrong, that I woulnd't do anything about it anyway..so way bother?(I just didn't put two and two together)

They told me that the triple screen came back that there was a very good chance that dd had Downs and that I needed to go for an U/s and genetic counseling.
Ok, fine if that is what we needed to do...

We went to the counseling that didn't help one bit(still wonder to this day what the purpose of that was)
Then at the u/s the tech started doing it and said that the nuchal fold looked a bit thick and that there were some *?valves(or something to that effect) in her brain that were open 10Xs as much as they should be. I had every dr on the floor in there trying to covince me to abort. Saying that I didn't want a baby that was handicapped and such...really pissed me off.

We had to go back for an u/s every month until she was born. I did and it took about 6 or seven u/s and finally the valves in her brain had returned to normal. Each time, practically fighting with them about aborting my daughter.

Fast forward to when she was born...
Happy healthy 8 pounds 3 ounces(all beit 2 weeks late!)
And no Downs syndrome!!
I just think now, that she would have been aborted if I let them talk me into it....ugh.

After that, I did my senior research paper on Prenatal Diagnostic Techniques. I found out that the Triple screen test had a horrid error rate. I was so mad that no one ever told me that, because I would have declined the test then! Oh, but it's the past.


SO, I say that you should do what you feel is right, and don't just take the drs word for anything!

I forgot to add, that in my situation I refused the amnio because I wouldn't have done anything differently anyway so it wouldn't have made a difference.

Mama to 14yo, 9yo, 7yo, and babe born 9/2012
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Old 08-17-2005, 01:43 AM
 
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I was 32 when I was pregnant with my DD and one of the ultrasounds showed some "bright intestines" ... they told me that it could be Cystic Fibrosis or Down Sindrome and the next step was to do the triple screen test. The radiologist told me "then you will be able to take a desition" ... I was so worried, so scared, so sad, and of course terminating my pregnancy was never an option. I spent many weeks waiting for the results, they did several u/s because also they said that my cervix was too short and some other issues... 8 u/s in total . Fiinally, after I spent most of my pregnancy worried and waiting for more test's results and else, my daughter was born perfectly healthy... but even if she weren't, I just can't imagine breathing air from this planet with out her on it .
I did lost so much time worried and hardly enjoyed my pregnancy, I would recommend you to really try not to worry too much and just prepare yourself for the wonderful miracle of being the mom of that precious child that you are carrying.
From what I know, the nuchal fold measurement test can detect up to 70 per cent of Down's syndrome babies and 90 to 95 per cent if combined with blood tests. I would go for the TS test, just for your peace of mind but I would skip the amnio. Just my opinion.
Please keep us posted.
Sending warm thoughts to you.....
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Old 08-17-2005, 01:53 PM - Thread Starter
 
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Thank you all for your thoughtful comments. Yesterday was a day of raging and tears- then finally peace. This baby is so active, she talks to me all the time. Whatever is going on, I know she's fine. So I'm going back to where I feel comfortable- telling the docs to shove their tests, and to keep their fear-mongering to themselves. We're fine. And however this baby is when she's born, we'll deal with it.
Peace,
Mary
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Old 08-17-2005, 05:21 PM
 
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Hi Dogmama,

First off, big hugs to you for getting this stressful information and having to deal with it in your pregnancy. Secondly, just because your baby showed a soft marker for Down Syndrome does not mean your baby will be born with it. Were there 2 or more soft markers present? Because if thre was only one, your baby's chances of being perfectly healthy are still very good.

I was told at my 20 wk u/s that our baby has a soft marker for a chromosomal abnormality. But she only had the ONE soft marker (choriod plexus cysts). When I researched it, I found that all it means is that her chances now go up to an astronomically high 1 in 500 of having a chromosomal abnormality. So really, the odds of a healthy baby are still very high.

This article may help you a bit:

Obstetrical Sonography: The Best Way to Terrify a Pregnant Woman

I know you'll be worrying about and pondering from here to your delivery. I will be, too. Even though I know that things will probably be just fine. We chose not to have the more detailed u/s or amnio. We didn't do the triple screen, either. At this point, we feel that no matter what, she will be loved and cherished. And there's nothing that can be done to change things now. So, we're focussing on having a healthy pregnancy and assuring ourselves that we can handle anything that comes our way.

Anyway, my thoughts will be with you and all the other mums here (and elsewhere) who have had the 'less-than-perfect' ultrasound experience.

Weary SuperMama superhero.gifto my  amazing neurodiverse 6 y.o. DD hearts.gif and to my on-the-go neurotypical 3 y.o. DS wild.gif

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Old 08-17-2005, 07:24 PM
 
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Quote:
Originally Posted by dogmama
Thank you all for your thoughtful comments. Yesterday was a day of raging and tears- then finally peace. This baby is so active, she talks to me all the time. Whatever is going on, I know she's fine. So I'm going back to where I feel comfortable- telling the docs to shove their tests, and to keep their fear-mongering to themselves. We're fine. And however this baby is when she's born, we'll deal with it.
Peace,
Mary

Good for you Mama! I am so glad you've found peace, because that is what you deserve, not fear and doubt.

Pac NW : mum to one amazing wonderboy - 3 1/2 :
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Old 08-17-2005, 08:33 PM
 
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I have so much respect and awe for mamas like you who find peace and acceptance so easily. Good for you and your baby!

If you do think about the possibility of Downs before birth or she is born with it afterall, the artical called Enjoying My Daughter with Down Syndrome by Lizzie Martinez in the March-April 2005 issue of Mothering (p28) was wonderful.
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