Sunday, March 15, 2009

Down syndrome - When did you find out?

Lillian asked me this question and I decided I would answer it now instead of waiting for my next Q&A. Thanks for the question, Lillian! :)

If you could turn back the hands of time, or if you were pregnant again, would you want to be aware of your child having DS in advance or finding out after delivery?

I have two answers for this: yes and no. And maybe. I guess that's 3 answers! haha
IF I could turn back the hands of time with Kennedy, I would have absolutely wanted to know she had Down syndrome before she was born. Make no mistake, Kennedy would still be here. However, I knew NOTHING about Down syndrome. I was completely and utterly devastated. At first I thought it meant she was going to die. Then I worried about what I had just done to our family, what I had burdened Kassidy and Kameron with. I freaked out about the future and I thought for SURE that if she DID live, she would be a vegetable. I just didn't KNOW.

If I would have known ahead of time I would have been able to research. I would have been able to read books and find websites like I would have found organizations like the Down Syndrome Association of Middle Tennessee. I would have seen that Down syndrome isn't a horrible thing. I would have seen that our lives wouldn't be as drastically altered as my mind first told me it would. I would have had a support system in place full of parents who had been there/done that. Instead, I was given information from the late 1970s which said that most "mongoloid children" were put into institutions.

Instead I was told by a nurse that I could still give her up for adoption... if I wanted to. Instead the first few weeks, and especially the first few days of Kennedy's life were filled with devastation and tears and fear and uncertainty and wondering why God did this to my baby. Instead, when I called friends and family to tell them of Kennedy's birth, I heard more "I'm sorry" than I did "congratulations". And now I get to carry that guilt and that bittersweet memory that comes back to me on her birthday every year. SO for the sake of educating myself, of preparing my friends and family, and getting connected with the right people ahead of time, yes, I wish with everything in me that I would have known.

I did have a subsequent pregnancy with Keeghan, and the question of whether or not we were going to check for Down syndrome came up several times. One family member even gasped and asked me, "What will you DO if THIS baby has Down syndrome TOO?!" Hmm. Kennedy was a little over 2 1/2 years old when I got pregnant with Keeghan. Getting pregnant was a thought out, conscious choice. Frank and I discussed at length whether we would be ok with having another child with Down syndrome. And the answer was yes, because really, Down syndrome alone is no big deal, and Kennedy is awesome! We would have been totally fine if our baby was born with Down syndrome. That was when we were sure we were ready to add to our family.

While we didn't care whether or not he had Down syndrome, we DID want to know about heart defects, which are common with Ds. We wanted to know because if he DID have a heart defect we wanted my prenatal care to be transferred to Vanderbilt instead of the Army hospital. Because of that, we decided to have a level 2 ultrasound. We refused any invasive testing (like an amnio) and we refused the AFP test, since it's wrong more often than it's right anyway. If Keeghan would have been born with Down syndrome, it probably wouldn't have phased us in the least.

NOW that all being said, I have heard the other side of the coin from parents who DID find out prenatally and wished they wouldn't have. Maybe it's a case of personality and what we, as parents, think we would be able to handle better; or maybe it's just a case of the grass being greener on the other side.

So all you parents out there with kids with Down syndrome, feel free to comment! Did you find out prenatally or at birth? Were you glad that's how you found out or would you have preferred it the opposite? Did you/will you do testing for subsequent pregnancies? I look forward to hearing your thoughts.


Courtney said...

NOPE! I am SOOOO glad I didn't know when I was pregnant! I DO NOT HAVE NOT WILL NOT WOULD NOT COULD NOT believe in abortion, so he would be here just as he is...but I know myself and I would have worried SICK!!!
I feel the same about subsequent pregnancies....I don't care if I find out out or not...but I won't do an amnio to find I prob won't!
I wish I would have had support and such after he was born...but I am still very very glad I didn't know before! I enjoyed my pregnancy very much!

mom2natnkatncj said...

I don't have a down syndrome child, but I do know that I have always opted to not do the testing they offer sometime around 20 weeks because one we wouldn't terminate and two it would just totally stress me out. My doctor did ask that we at least test to make sure there were no holes in the spine or anything that could be fixed right in the delivery room that they could be prepared for. I did agree to that sort of testing. Joe and I have discussed this though and I'd prefer not to know. Although, I can see that being prepared for what could be would be nice too.

Anonymous said...

Nope, we didn't know that Carly would be born with Down snydrome. We did not do the AFP test, I dont trust those tests. Plus, I always figured, that God would give me, what He wanted me to have. Anyway, I'm a worry wart. I would have worried myself sick. Therefore, Carly would have been born much sicker. They likely would have found her very bad heart defect and I know me. I would have been in terrible shape and maybe I wouldnt have carried her to term. Thank God we made it to full term. So, I guess for me, I wouldn't have wanted to know ahead of time. Although the utter shock of finding out by the look on the nurses face in the delivery room maybe wouldn't have hurt so badly if I would have known ahead of time.

Wendy said...

I did not know until birth. I like you wonder if we would have had a lot more celebration and a little less wondering what it all meant. I would have been able to do research and gone aligned myself with a support system. I wonder if I would have had better words to throw at the arrogant doctor who came in to tell us he thought Carley had Ds and after asking him a few more questions eventaully made the statement if she didn't He would eat his hat!(I wanted him to eat his hat either way cause he was just rude!)

I had a misscarriage before Carley so I refused all testing and would never have an abortion and was pretty much at the point of feeling I needed a baby no matter what and did not want to worry.

I also know that having that tiny sweet little baby in my arms sheltered me from a lot of what the doctor was saying and only made me that much more defiant and protective!

I also wonder had Carley had a heart defect how would I have felt not knowing?

This question is one I often ponder. I am one of the contacts in our area for expecting and new parents and I try and put myself in their place when I talk with them.(I also offer prenatal parents someone to talk with who knew prenatally just in case)

But that nagging thought is still there how much would I have worried, or not worried, how much support would I have been able to find, would I have made our family understand, or not understand, etc, etc, etc But sometimes I just think it was easier to hear having that adorable little cuddle bug in to wrap my arms around??!!??!!

Okay so I did not really give a definitive answer!! The only thing that I can say for sure is that I am humbled, blessed and glad that we were given this special little girl and then blessed again with Macey.

Monica @ Monkey Musings said...

I agree with much of the previous comments. Knowing would've been too difficult and perhaps resulted in an unhealthy pregnancy out of fear and perhaps an unhappy birth experience. The birth was wonderful and a joyous occasion as with my other 3. I didn't learn of his diagnosis until about an hour later when he was taken to the NICU. I will always decline the tests because I trust God knows better than I what I need.

ourjoyfulljourney said...

I just want to commend you on not listening to that nurse, to knowing in your heart that this is your baby and given to you for a purpose! God has a plan for this little girl and i commend you for fighting for her!
It is so neat to be able to see what's going on in your lives and how you guys are doing. And be able to see the work God is doing in and thru your families life!..i don't know if you guys remember us, but we knew you years ago in mike and jen parsio's small group....
Your family is in our prayers! May His blessings continue to pour out on you and your family :)

Sweet Angel said...
This comment has been removed by the author.
Kim said...

We did not find out until the day after Mattie was born. I wouldn't change a thing. I had an awesome pregnancy. I'd never have an abortion but I would have worried the whole time. It took me about 2 weeks after Mattie was born to realize that everything was going to be fine. I never shed another tear about her having Down syndrome after that. I felt at peace and knew what a blessing she was to our family. As my middle child would say, "We are the lucky ones!"

Kim said...

I did not find out prenatally or at birth. We found out when Charlie was 2 1/2 months old. It was perfect this way. We had already fallen in love, so it was easier to go through the grieving part. At least I think it was easier.

I don't know if this is weird, but I would love to have a second baby with Down Syndrome and experience his/her birth as a joy and a wonder.

I have a distant friend who recently had a baby with DS. They new prenatally, and while they were nervous about some health issues, they experienced her birth as being so joyful, unique, and a blessing.

Sweet Angel said...

We found out Kristen had down syndrome about 10 minutes after she was born. We had a pediatrician who was...well old as dirt! He told us that there were places for kids like these. Looking back now I wish I would have thrown something at him. I agree with the others that the chance to become educated might have been a good thing, and I too feel awful for the devastation I felt for the first few hours or days. A sweet mom with a little girl with down syndrome came to visit me and she gave me some advice that didn't make much sense then, but later looking back it totally hit it on the head. She said that is isn't fair, but when we have a baby that is "Normal"(whatever that means) we just automatically love them, but when we have a baby with down syndrome, it is kind of like they have to earn our love. It's alot like the baby we expected never showed up, instead something we weren't expecting came knocking and only time could help us accept what was now staring us in the face. I had three more children after Kristen and I did not have any testing other than the normal ultra sound, It wouldn't have mattered, it was what is was. And after having Kristen, I knew anythng was possible and I was ready.

Stephanie said...

I did not have ANY prenatal testing with Ralphie, not even an ultrasound. Ralph was born at home and had a very bad case of meconium aspiration. As my midwife was suctioning him she said, "I think your baby may have Down Syndrome." It seemed as if a sort of peace fell upon me at that moment. It was no big deal...I could feel it.

I feel somewhat responsible for some of his health issues. My dates were off. I was under extreme levels of stress. I often wonder if knowing ahead of time would have made any difference. I wouldn't have considered abortion and I don't think I would have been a worrier. It would have been nice to be more prepared.

I'm due to have another baby any day now! I would take another baby with DS in a heartbeat! I did have an ultrasound to look at baby's heart and it looked fine. I did not have any additional testing, though. This baby will be born at the midwife's birth house which is very close to a hospital, if needed.

This may be my last physical pregnancy. I believe God has placed a call on me to adopt children with DS who are facing the institution. Thank you, Renee, for pursuing Kellsey. You are an inspiration to many!

Karyn said...

Thanks so much for posting this. Such an interesting post and I loved hearing your story and thoughts on this. We knew prenatally with Quinn. I needed it this way and I would do it again. I was able to prepare and then her birth was just a happy occasion. In fact, I was a bit confused because everyone was so positive at her birth I double-checked that they remembered that she had DS - silly me. We did have difficult moments during the pregnancy though - some people (family) mentioning about termination and/or having a cross to bear. But my medical team (regular ob/gyn and perinatologist) was the most supportive and I didn't receive any pressure from them. I am a need to know type person, so it worked out well for me.

Lynn said...

Amnios aren't my favorite things in the world...................
Thought I'd use my confirmation verse today. Praying!
Acts 4:12 Neither is there salvation in any other: for there is none other name under heaven given among men, whereby we must be saved.
Prayer Bears
My email address

Crystal said...

I dont have a child with DS but I do have a child with TS (Turner Syndrome) and we knew prenatally because of a cystic hygroma and heart and major kidney issues seen on U/S we opted to have an amnio because I really needed to know, like the person above I am a need to know person, plus we knew there was something physically "wrong" I would never do one based on the triple screen @@ stupid test or age etc... but there was a range of possibilities and I really needed to know what was ailing my baby just for my own personal needs to research and be prepared, I needed to know the chance of my child living, was it T21? Was it T13 or 18? Or TSXO?. I also think I would rather do some of the grieving during pregnancy when I didnt have a baby to look after, and Post partum depression is all too common and I think finding out at birth surely wouldn't help that situation. That being said sometimes I wish that I hadnt known so I could enjoy my pregnancy more but I think I did pretty well considering.. I was afraid to put up the crib etc.. because the survival rate for TS pregnancies is only 1% (yes my daughter is a sweet miracle), although most miscarry in the 1st and 2nd trimester there was still that chance she would be stillborn. I think had I not known she was sick and to have the shock and grief of a stillborn or very sick baby would have been too much for me to handle at a time everything should be so joyous, birth. We wouldnt have been prepared at the level 3 NICU hospital, etc. family members wouldnt say stupid things like whats wrong with your baby? (although I think that would happen post natal too.. family is stupid sometimes (alot of the time), .. I would have enjoyed my nieces birth rather then feeling jealous and upset, Would have enjoyed my cousins baby shower... without said family members saying stupid shit. I really think its the grass is greener on the other side.. I think prenatally or postnatally both have their pros and cons and no one wants to know period... ever, even though we love our kids I can say most honestly I wish I would have never had to go through any of it as would most other parents.

JRS said...

We skipped all testing initially, but they found enough soft markers at the 20 something week US to strongly suspect Ds. We had an amnio to confirm. Having Sophie was our choice and one we never, ever faltered from. We knew we would accept her and love her just as she is, even in the midst of our deep shock and pain. Our doctors made sure we knew of the options, but we never felt pressure to terminate from the medical community. (I can't say the same about a neighbor or a few friends).

Now we are expecting again and I refused testing. We too are doing level II USs to see if there are any problems (like heart, bowel, etc.) that would require surgery.

I can't answer if I wish I wouldn't have known with Sophie, because I did know. It happened the way it happened, so there must be a reason. I got through the most intense grieving while still pregnant, was able to tour the NICU, interview the surgeon for her duodenal atresia, connect with others in the club,and get as prepared as I could. I will always feel guilty about my grieving period while still pregnant as I believe babies can feel their mothers emotions in utero, but I've worked hard on letting it go.

Sophie is 1 of 2 (soon to be 3) loves of my life and her life has a GREAT and WONDERFUL purpose.

Kathy said...

We knew at about 20 weeks, all the ultrasounds were indicative so we chose the amnio. It was important for me to be sure, because of all the reasons you listed. I joined the local DS assoc where I was welcomed by all the btdt parents, and I learned in advance that DS is not to be feared. I'm glad I knew. I'm glad I didn't get that surprise at birth or shortly after. And I don't expect to have any more children, so we've never talked about testing for the next one. :o)

Maureen said...

This is exactly why you deserve to go to my blog. I have something for you there. :)

As similar as our experiences were when our daughters were born. I am glad I found out at birth, even with the whole heart defect. I think the healing was easier with a baby to hold and smell and touch.

Megan said...

We refused all prenatal testing with both A and S. I am glad I didn't know S's dx during pregnancy as I think it would have worried me and I wouldn't have been able to enjoy being pregnant. We, luckily, had a pretty great person who gave us her Dx and guided us thru the process. That being said, I would do the Level II u/s should we get pregnant again. I, too, would want to check for any Ds related medical issues that could occur.

Lund7 said...

Like JRS said above, we saw several soft markers at 20 weeks but the doctors reassured me that the chances of the boy twin having DS were very slim. Finally at 32 weeks, I had an amnio and it was confirmed. That gave us 4 weeks to cry, grieve, and start to discover what this really meant. Once Ricky and Greta were born, we were so excited to meet them and the birth was such a joy and celebration. Everyone knew by then and it wasn't a shock but rather a relief and blessing!! I wouldn't change a thing about knowing when we did.

Courtney said...

I am glad that we found out after Lucy was born. We never would have terminated if we found out prenatally, but I think of all the months I would have spent worrying. I had the luxury of looking into my daughter's gorgeous eyes before hearing those devastating words. I had already connected with her and seen how beautiful she is.

Clearly, I can't know for sure. Maybe knowing ahead of time would have had its merits. But, I believe that I found out exactly when I was supposed to. I know how anxious of a person I am. I think it was best for both Lucy and me that I had her in my arms before finding out. I have always said, she makes it so easy to be her Mommy. She saved me from despair in those earliest days. I wouldn't change a thing.

erika said...

I am a NICU and delivery room nurse (for the baby). What do you think the best way for a nurse to approach a parent and let them know that we think something might be wrong (like DS or something else)? I never know how to say something like this or how to approach a parent who has just given birth. I feel like EVERY baby is such a miracle and a blessing (I have my Emily and expecting again in Sept)I want to be sensitive and caring and give them good information. We usually take babies to the NICU for "more testing" (ie the ped to look them over more etc). Do you think this is ok? Thanks for your help :)

Meredith said...

I'll have to come back and finish reading comments later, but we didn't find out prenatally OR at birth, and I ab SO glad that we learned the way we did. Brianna was 2 months old when she was Dx'd w/ Ds and there was never any mention of it until that time. They did think she may have another syndrome at around 5 weeks and that's why we did the test which showed Ds 3 weeks later. Now we have adopted 2 more children w/ Ds and I'm pregnant again, and we opted for the nuchal fold scan and a level 2 ultrasound w/ Fetal echo this time around. I too refused the AFP just as I did with my first 2 pregnancies. The first two times was because I didn't care to know- this time we refused because we know how often it is wrong :) If this baby I'm carrying now has any disabilities we will be completely fine with it. In fact, we kindof think it would be God showing His sense of humor since he gave us our first by birth, sent us to Ukraine for two of our children w/ Ds, why not give us another by birth?

Also, when Brianna was dx'd it wasn't such a huge deal because I have a friend I grew up with that has Ds, so when we were given the Dx we were MUCH more afraid because she needed heart surgery than the actual diagnosis of Ds. I guess a lot depends on what you know before hand. I've worked with many people w/ Ds in the school system as well and other disabilities, so it wasn't quite so scary for us.

Thanks for posting Renee ;)

Stephanie said...

Ditto to Koby's mom. I found out after Megan was born and would totally keep it that way for fear of a "freak out - stress out" on my part. I am a constant worrier and that just would not have been an enjoyable pregnancy for me. I enjoyed every minute of carrying Megan and wouldn't want it any other way.

Tracy said...

I knew before Rachel was born. We had an amnio at 17 weeks. I was glad to know before hand. The OB did tell me that termination was an option, but when I told him that we would not be terminating, he smiled and said he had never had a mother terminate a baby with Ds and he thought I was making the right decision. The geneticist, on the other hand, gave me terribly dated and horrible info that told me that in a few years we could totally elimate Ds with early testing. I had been a pediatric nurse prior to Rachel's birth, so I knew pretty much what Ds entailed, thank goodness.

I did most of my grieving before she was born, did my research and connected with organizations, and did a fetal echo to rule out heart defects so that we could be prepared. We had just moved to Duluth, MN and needed to know if we needed to travel to Minneapolisto be near Children's hospital to have Rachel. I would not have wanted it any other way, eventhough I did not enjoy the pregnancy, I was pretty much done with the grieving when Rachel was born and was able to enjoy her from the very begining.

Lillian said...

That makes sense and thanks for your honesty. We are trying to decide whether or not to do the 20 week testing for defects (baby 3). I just wanted your view point. At this point, I want to skip the testing since aborting isn't an option for us. I see no reason to worry during the pregnancy. thanks!

datri said...

We didn't find out until 2 weeks after Kayla was born that she had Down syndrome. The pediatrician suspected it at birth at the hospital but opted not to tell us, and told the nurses and the rest of the staff not to tell us either. I'm glad, in a way, that he handled it that way. Because it gave me two weeks to bond with Kayla as a BABY not a "baby with Down syndrome."

My AFP did come back as 1:60 for DS and the OB suggested that I should get an amnio. But I'm chicken of the big needle so we didn't do it. We did have about 4 Level II ultrasounds, but no markers showed up.

During those times, we talked about what we would do if the baby had DS. We decided we would not abort, but we were afraid that it would ruin us financially. (it hasn't, of course)

marlene said...

I found out the first moment I saw her face after delivery - no one had to tell me - and I thought my world had come to an end!

I am saddened that I do not have a happy birth story to tell Aleena about someday. I am saddened that all I did was cry. I am saddened that I didn't want her and that I wanted to 'wake up' from this horrible dream. I WISH I could have celebrated her birth.

I didn't KNOW!!!! I didn't KNOW how precious a child she was going to be. I didn't KNOW how much I was going to love her. I didn't KNOW all the great stuff she was going to be able to do. I didn't KNOW that I had been given a GIFT and a BLESSING!

I WISH with all my heart I could have celebrated her birth! I often wonder what it would have been like to know ahead of time and prepare. But I would have had all those raw emotions during the pregnancy then. It's only NOW that I would be able to hear a dx of Down syndrome and be able to celebrate . . . because I've 'been there, done that' and found out that Holland really is a beautiful place! :)

Jennifer said...

I did not know until Aidan was born, and I think that was perfect for us. We had almost an entire day of happy bonding before we had any stress. I'm pretty sure we would have done an amnio if we had some serious problems show up on an ultrasound, just to know what we were dealing with, although I'm not positive on that. Neither of us are into invasive testing. With my following pregnancies we opted for the ultrascreen at 13 weeks and a level 2 ultrasound. We are definitely not willing to have an abortion, but I would like to know if we should expect some emergecy at birth, like a heart defect

Anonymous said...

I am one of the older moms with a DS child on this blog. My son will be 40 next month.
He was born weighing 8lb. 13 oz with a full head of blond hair which the nurses combed and parted after the MD ordered he be placed in an isolette. That little guy's arms reached both sides he was so big and active. HE didn't exhibit the floppiness or size of the average DS baby.
The Ped. who was on call and who I never had met, chose to come into my room to tell me that my son had DS. He blocked my husband from my side as he informed us. It was not the way to learn about your baby's condition; from a stranger. My OB/GYN had gone away that weekend. She was not willing to categorize Paul. In fact she argued for him to be taken out of the isolette.
I knew nothing about DS, but my husband did. It was a very odd time with advice to just 'place' him. There were no organizations dedicated to inform parents about any birth defects. MD's and nursing staff all just repeated the dogma of earlier years with sympathy in their eyes for us.
We took him home. The first aft. as I napped, he turned over from tummy to back in his crib. HUH?
We didn't want to label him before we knew the truth which we suspected early on. We waited until he was 11 months before we had him tested at UCSF neonatal clinic. Yep, trisonmy 21!
I have known parents who had a DS child and did amnio with subsequent pregnancies, and chose to only keep the fetus who did not have DS. We believed in ZPG so we had already chosen to not have more kids, so that was not an issue. Once having a child with DS I knew I could never choose an abortion. Having that decision taken away via our earlier plan for my husband's vasectomy made life easier on us.
We spent many years as advocates, putting in place many of the services whieh are there to help new parents today.
Paul gave us a great life of learning how to give and how to protect, and how to advocate for the rights of others.

Lisa Turner said...

I found out about Mara having Ds before she was born. We had our typical 20 week US and found that her kidney was enlarged. They had us go for a level II US and found that it had grown even more as well as swelling in her brain. They pretty much wanted to know when we were making the appointment for an abortion. I was in SHOCK! Abortion was not even an option for us.

My husband did some research, and found that you can do a fetal MRI which was a lot less invasive than an amnio as the risks were too high of losing her with an amnio. We wanted to know more about what was going on with her brain and kidney. During the MRI, they found that she also had a complete AV canal defect. All of the doctors met with us at the end of the day (Urology, Genetics, Cardiology, Intensive Care Doctors, etc.) They informed us that they were now 95% sure she either had Ds or some type of fatal chromosome syndrome.

We were searching for some didn't really matter to us if the baby had Ds or not. We would love her no matter what. My husband asked for some advice and the doctors said that they would need to know what they were dealing with during the delivery just in case something would go wrong with me. We opted to have the amnio so we would be informed. Looking back, we are so happy that we did find out. We were able to do research and know exactly what we were dealing with for medical reasons.

We came up with a birthing plan, and was able to provide every doctor with the type written plan because her kidney's were so large that she needed to be transported to Children's hospital immediately after birth to try and save her kidney. I

I would not have the amnio just to find out if she had Ds or not. We just needed to know for medical reasons.

rylie's mom said...

Well I never in a million years would have thought I would have a baby w/ any type of problem. Finding out at birth was a total shock and I didn't appreciate being blindsided! LOL! Maybe if I knew ahead of time I could have been more prepared, but it took me at least a year to get over the shock, so I probably would have been devastated my entire pregnancy . When I got pregnant w/Cesalie 4 years later I wasn't worried about Ds at all, but I was sure something was going to go wrong. I now assumed having a baby without any problems wasn't going to be the norm now. I felt completely the opposite from when I was pregnant w/ Rylie. I did the Nuchal scan and level 2 ultrasound w/ Cesalie and even though they said everything was fine, I still didn't believe them. Right after I delivered Cesalie I jump up and ask them to tell me now if there was anything wrong...they just laughed at me and said she was fine. But if you ever read my birth story w/ Rylie you'll know why I didn't want any suprises later.

Julie said...

We did do an amnio and found out Jack had ds at that time and I am GLAD! I like to be prepared so I'm still happy we knew ahead of time. No more pregnancies here, but if we were going to get pregnant again, I would not test just because I know this time it would be okay no matter what.

Stephanie said...

I didn't know until the day my son was born that he had ds. I did have an afp test that was negative so I was a little shocked. But the strangest part was that when my older son (two years older)was born, we were told that he too was suspected to have ds. When his blood tests came back they were negative and he's now a healthy 5 year old. So, when they came once again with the possibility of ds I kind of blew it off.. lol.
What worried me more was that this child did indeed have a heart defect, and a big one. The cardiologist said that this defect was sometimes seen in ds but not exclusively so we waited for blood tests. This time they came back positive to my disbelief. In some ways I wish I had known so that I could have been more prepared, but I think I would have just worried way too much. Luckily he was born at the best children's hospital in Central Florida to handle is heart defect. Also, many Mom's I encounter say they were pressured to terminate by their doctors and that would never have happened. I guess it all works out the way it does for a reason.

Adrienne said...

I am 30 weeks pregnant now and found out at 18 weeks that our son has DS. I am soooo glad I know. But everyone is different. I could not imagine finding out at birth as others could not imagine going through the entire pregancy worrying. But it hasn't been that way. I worried for about a month while I did research but now I've met so many wonderful people in life and on-line and everyone that is important to me is so excited to meet our son and to love him just the same as they would if he didn't have DS. Thanks for posting this. My only thing is that I wish some people didn't assume that because you do the amnio you are going to terminate or that you put your baby at risk. We had a 1 in 10 chance after the afp and 2 markers (AVSD and shorter limbs) I just had to know so my son could get the care he needed. The risk (1 in 600) was nothing compared to my 1 in 10. And I would have worried myself sick wondering and hoping he didn't have it.

Monika said...

An online friend of mine sent me the link to this post - thank you so much for it!

I am 20 weeks pregnant with our first baby, after years of infertility. Our Ds risk came back as 1:41 because of the bloodwork (the nuchal fold measurement was excellent, however). Today was the Level II u/s and the heart and everything looks great. We opted out of the more invasive tests since I'll be giving birth at one of the best women and children's hospitals in our area, and have decided to just learn about Ds, just in case. We keep thinking Ds doesn't seem all that bad by itself (without the defects) and it wouldn't be, by any means, the end of the world. Your post makes me feel even MORE secure about our decision. Thanks! (((hugs)))

Michelle said...

We found out at birth, but suspected during the pregnancy. My AFP came back with odds of 1 in 88, but no makers showed up on the u/s - except she was on the smaller side, but nothing to alarming.

So I did go through my pregnancy wondering the whole time, but I didn't want an amnio.

Sometimes I wish I had known beforehand, because finding out right at birth took some of the joy away from that moment. I was consumed w/her dx instead of the fact I just gave birth to my first child. It wasn't the happy event I imagined it would/should have been.

But if I had known for sure during the pg, I probably would have been depressed during that time not knowing what to expect. Ugh! Not an easy answer either way :)

The only testing I had w/Lucas was the combined 1st and 2nd trimester screens - and that was mainly because I wanted those extra u/s pictures with him LOL If anything showed up we wouldn't have had an amnio w/him either though.

Anonymous said...

Hi, Im the aunt of a child with Down Syndrome. Im very young but I wanted to know why was'nt my sister warned while her pregency. We just found out the baby had DS , three days ago. gladly the baby does not have heart defects and he does not look like a DS child. He will not need a lot of therapy. He is 7 months. I love my nephew so much. He is a gift from God.

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