View Full Version : Prep for Down's baby?
Girlo December 23rd, 2008, 07:36 PM I don't believe any of our members here have a child with Down's Syndrome, but you might have a friend or family member who has been blessed. :)
I'm debating on doing an amnio. After being so definite about NOT wanting one, my OB gave me something to think about during my last visit. He said that at least half of his patients who elect to have the procedure, choose to do so to be better prepared for a special needs baby.
My main risk would be for a baby with Down's Syndrome. At my age, the risk of having a baby with this is greater than the risk of m/c from doing the amnio. My main question is would there be an advantage to knowing that we have a Down's baby ahead of time? The knowledge that the baby has Down's would not change our decision to have the baby in any way....I would just like to be prepared, if that would help at all.
What would you do? I still feel strongly about not wanting to risk anything that will jeopardize the health of this pregnancy and baby, which is why I'm conflicted. Why on earth would I willingly put myself through something that might possibly make me lose my baby? Is being prepared for a special needs baby worth the risk of loss? If anyone has any opinions or insight, it would be much appreciated. :) Thanks.....
schwanda December 23rd, 2008, 07:40 PM I had amnio with 2 of my 3 pregnancies. I strongly wanted to know. I'm not sure if I would have terminated or not.
A good sonographer *should* be able to see "warning" signs that the baby is at risk. It's not 100% but it should give you a decent idea.
Given that you wouldn't do anything and that you've had multiple losses, I would probably avoid the amnio.
Amanda
pam December 23rd, 2008, 07:49 PM I'd also be torn. I'd be tempted to wait for the ultrasound & see if it raised any concerns.
IMO, the main advantage to knowing if your baby has downs would be psychological for you (& Paul). Would you stress about not knowing? If your child has downs do you want to know as soon as possible or would you be okay finding out on his/her birthday? I guess I'm thinking of the hormonal pregnant woman vs the really really hormonal new (again) mom.
AmyP December 23rd, 2008, 08:25 PM While I don't have a Down's baby, I do have a special needs child. In a lot of ways, I wish I'd known before I had her. I would not have terminated, but I wish I'd known sooner that Sarah was autistic. I would probably not have done anything different as far as getting her some help, but it would have been nice to know to expect some issues.
The choice is yours, obviously. And it's a tough decision considering you have already had losses. If you think you can deal with finding out on the child's birthday that they have Down's, then I'd wait.
Girlo December 23rd, 2008, 09:06 PM Thanks for the input so far. :)
The good thing about Down's is that it'll be apparent immediately after birth if it's there. We'll know within minutes. I just don't know if there's anything we'd need to do to help the baby during that early time, where knowing ahead of time would be beneficial. Should we have stuff set up at home? How about with the ped? Should the OB know so that they can do some things different/special?
Silke December 23rd, 2008, 09:23 PM Shannon, I was in the exact same situation as you. Amnio wasn't pushed on me, but it was highly suggested. I agreed to the Nuchal Translucency test. It is statistical tool only to calculate your risks. Mine was that of a 20 year old. Yes, we still could have had a down baby, but having went through three miscarriages, I couldn't bear the thought of losing this baby to any amnio complications. Immediately after the transnuchal lucency u/s, the neonatologist asked when I wanted to do the amnio. I turned it down. She said, we could still do the amnio if something abnormal would show up in the big u/s. Even then I would have said no. An amnio wouldn't have changed my mind about this baby, so we decided against it since I was not going to terminate anyways. DH and I were very aware of that we might still bring home a special needs child, but we were ready to welcome any baby. I didn't enjoy the pregnancy any less or was constantly worried. As a matter of fact, if I had known of a problem, I would have driven myself nuts with preparing. :lol: I went with my heart, a clear no.
ETA: Even if the amnio comes clean, you could still end up with a special needs child.
Silke December 23rd, 2008, 09:24 PM Shannon, there are different grades of downs. Some of them are not as apparent right away.
Clare December 23rd, 2008, 10:24 PM I wouldn't do it. I was always told that Downs Syndrome would be picked up on the 20 week u/s aanyway :dunno:. Why not wait until you have that, and if any problems show up then start debating the amnio?
Bonnie December 23rd, 2008, 11:51 PM I think that if you know you would not terminate, then don't do the amnio. While the risk is small of miscarriage, there still IS a risk. I personally know 2 people who lost babies due to amnios. There was nothing wrong with either baby. I've had 2 amnios, with Caroline (very out of whack AFP) and with Tatum (age)... and I have one special needs child: Courtney.
Even if I'd had an amnio with Courtney, it would not have revealed her issues, BUT...if I had known Courtney's "diagnosis" such as it is, I honestly don't know what I would have done, because what they would have told me would have been horrible and extreme, much like things they told me when she was born. They were wrong, and none of that worst case scenario information came to pass. I was able to 100% enjoy my pregnancy with her, not freak out, etc. and I am better for that, I think. Yes, I was shocked when she was born and it was hard to adjust, but I have no idea what I could have done to prepare.
Julie December 24th, 2008, 02:44 AM My youngest sister has Downs, and my Mom had her later in life.
Feel free to ask me any questions, and if I don't know the answer, I can ask for you.
I do know that my Mom was 40/41 and refused the amnio and there was no abnormality shown on her ultrasounds.
I think it boils down to a personal choice. Myself I would like to know what I was getting myself into and how to prepare myself for the different risks. It was alot for my Mom to digest at the birth.
It was unknown if my sister was going to make it due to some heart defects. By the time she was 1, I think she had at least 1 open heart surgery if not two.
Again, let me know if I can answer any direct questions :)
Lyoshka December 24th, 2008, 08:12 AM I strongly debated this too, Shannon, with both kids... I wanted to be prepared in case there was a problem (DH is a carrier for a chromosome translocation syndrome, though with that, if there is an unbalanced switch, the baby is usually miscarried right around 5 weeks, b/c it's severe). Still, I wanted to know.... in the end, we declined amnio with both boys, because i knew that no matter what, we would never abort, and risking that .5% miscarriage chance from the procedure scared me, because I have friends who have friends who had miscarried from amnio (though i realize it's SO extremely rare). So i asked for a Level II u/s- i realized that it only measures form, not function, but to me, if every organ was developing on target, size-wise, that was good enough for me.
So we chose not to do Amnio and while I would have wanted to know of any issues, I'm glad I made that decision. If you know that you won't terminate even if there is a problem, I wouldn't do it.
Eleanor December 24th, 2008, 10:13 AM I don't think I'd do the amnio. You're close enough to Seattle that if the baby has special health needs you can get there right away to take care of it. That's the only thing I'd worry about in terms of preparing. Otherwise, like others have suggested, I'd go the Level II ultrasound route. (We actually did consider amnio with Rebecca, when an ultrasound showed a marker that's sometimes associated with Trisomy 18- which is associated with either late MC, still birth or death by about a year of age- that's something I would have needed to prepare emotionally for! But later markers were reassuring, and we didn't do it)
Karri December 24th, 2008, 10:24 AM I would not do an amnio. To me, the risks are not worth it. And honestly, what would you do to "prepare"? I'd much rather enjoy my pregnancy instead of researching and worrying and whatnot.
magoo December 24th, 2008, 10:55 AM Considering your main concern is DS, I wouldn't do the u/s.
My cousin's son has down's syndrome. It is definitely a spectrum with some people with mild symptoms and others who have more symptoms and more complicated ones. I think that the extent of most of the developmental delays would become apparant with time. I doubt that they would start too much therapy with a teeny baby. I know that heart abnormalities are common for people with DS, but I imagine that anything severe enough to require immediate attention would likely show up on an u/s. :dunno:
It sounds like you're already preparing your emotions for the possibility of a child with Down Syndrome, so that's good. Maybe your Dr. could shed some light on whether knowing in advance would give the baby any advantage.
Girlo December 24th, 2008, 12:56 PM Yeah!! :grouphugg You guys have given me some good info....and reinforced what I had in my mind to begin with. :) My OB is definitely NOT pushing me to have an amnio.....just giving me something to think about so I can make an informed decision....which is why I love him. :)
While I really don't want an amnio, my main question was whether there would be any way to prepare (to make things better/easier for the baby when it arrived and for us to have things "ready" for a SN child) and is that a better thing to do than have it be a surprise? Does it make any kind of difference at the newborn stage?
From what I'm reading (here and on MDC), the answer is no. :) An amnio isn't the "end-all, be-all" knowledge-giver when it comes to having a SN child. And it sounds like the biggest risk with a DS newborn is heart issues (physical anomolies), which would be seen at the midway u/s. I was already planning on having a long, detailed u/s at 20 weeks to make sure everything looks good, and I'll just go ahead with that and call it good. :aok:
Paul and I are already mentally preparing ourselves for the possibility of a Down's baby, so we're getting there in our minds. Either way, it's our baby and we're already madly in love and we've worked damn hard to get them born. The rest is details. :)
Thanks guys.... :grouphugg
Sandy December 29th, 2008, 10:52 PM I throw my 2 cents in as well - I felt strongly against an amnio for all three of mine. And I was of "advanced maternal age" for all three. The first reason why was b/c my brother and his wife lost their baby at 20 weeks b/c they elected to do the amnio. That was years ago but it resonated with me. It was never worth the risk to me. Like you, I would have never terminated the pregnancy either way.
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