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Post by amyzimoski on May 12, 2004 9:24:59 GMT -5
This is just a curiosity question. When did you find out that your child has Down Syndrome? Did you know before birth or after? Do you believe it is better to know before and prepare or to know after the child is born so that you don't spend your pregnancy worrying about what could happen. I found out after my daughter was born. They informed me in the delivery room.
Let me know what ya think.
God Bless!
Amy
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Post by Connie on May 12, 2004 10:03:24 GMT -5
Amy, I did not know ahead of time but, I always felt something was not just "right" with the pregnancy. I knew the minute they laid him on my chest and the doctor confirmed it the next morning. On one hand, I am glad I did not know about him having DS because I would have worried and fretted the rest of the pregnancy but, on the other hand...if Collin would have been born with any major health problem I think we would have been in trouble because the hospital he was delivered at was not equiped to handle kids with any major problems. Connie
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Post by jeannette on May 12, 2004 10:06:03 GMT -5
I found out at birth. Because of my age I had a diagnostic ultrasound which did not indicate any problems. In fact, the Dr said she was a healthy baby girl. Needless to say, we were stunged at the diagnosis. We were only going to have the amio done if they found something medically wrong in the ultrasound but everything checked out, even my blood test. When Kyah was born, she was rushed to ICU and after maybe 20 minutes the Dr came in and not only told us she was very sick but also said she had features of DS and they did a chromosone study to confirm it.
I don't think I would want to know if the child I was carrying had DS. I think it would be a little stressful during the remaining term of the preganancy. MeKyah is our first child and I also have one teenage stepson. We have not ruled out having another one yet but if we do I wouldn't consider an amio unless a problem shows upon an ultrasound.
Sorry, I know I gave you more than you asked for so I'll end right her. Hope it helped.
Jeannette
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Post by jennanne on May 12, 2004 10:16:37 GMT -5
I found out there was a possible problem with the pregnancy at 18 weeks, after my first ultrasound. I was referred to a specialist and had an amino done around 20 weeks. It was confirmed ds at around 21-22 week mark. I was happy to know for sure of the diagnoses instead of wondering throughout the pregnancy. It was also great that the baby could be monitored for possible heart defects and other medical problems before birth. The diagnoses during pregnancy added stress but in hindsight I'm glad we knew beforehand. It gave us time to prepare mentally and seek advice on early intervention.
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Post by amyzimoski on May 12, 2004 10:23:55 GMT -5
Just a little more info on my child's birth. The doctors where also surprised at the fact that my daughter has DS. I was 25 when I was pregnant with Natalie and they did all the normal blood tests. They saw no need to do an amnio because of my age. I am glad that it was a surprise. I think I would have driven myself crazy with worry. I have Natalie (4) and two step kids; a boy (6) and girl (10). We would like to have another child. One of those his, hers and ours situations. The doctors told me they would consider my next pregnancy a high risk because of all the medical problems my daughter had at birth. I am back and forth about the amnio. It doesn't matter if my next child is DS or anything else for that matter but I have been told that some medical issues can be corrected while still in the womb. There is also a small risk that an amnio can hurt the baby too. That is kind of a hard decision for me to make. I think maybe I should just trust God's will and not let them do one. Anyway I am just rambling on now so I'll stop.
Thanks for listening!
Amy
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Post by meghans_mom on May 12, 2004 10:24:50 GMT -5
Amy - I found out during my pregnancy....I guess about 1/2way thru? For me, it was the best thing - although I did not enjoy my pregnancy because of the worry and fear of the "unknown". I had a very good pregnancy (healthwise) and all I heard ALL DAY -- oh you're not sick? You're SO LUCKY! You haven't gained that much weight. You're SO LUCKY! You have so much energy. You're SO LUCKY! At the time I didn't feel lucky...and all of the comments made me feel that much worse. I worked in a large nursing home...I saw my 300 co workers everyday - and heard those comments all day long - and I didn't share the news about MM's DS with anyone there. (except my bigmouth boss...but that's another story, LOL!) I didn't feel like celebrating my pregnancy...but I planned and shopped to make things feel "normal". Plus I was going for non-stress tests 2-3 times a week (each one 2 hours), ultrasounds every other week...taking up hours and hours and creating MORE Stress...my crazy (ex-)doctor was worried about a law suit if there were complications, I imagine. I know all of this doesn't sound like it was the best thing for me...but it truly was. I think if I had found out afterwards it would have taken me longer to come to terms, and to bond with Meghan. As it was I had a 'double mourning' period...once during the pg and once again when meghan was born. I believe God knew what he was doing in letting me know ahead of time. I needed that time to look stuff up and research My AFP was 1 point off "normal" so we really thought it was a fluke - when we figured out the percents it was less than 2% chance. (based on all the tests before the amnio). it's funny...we've talked about this over and over - me and my friends -- and the moms who knew ahead were always glad and the moms that found out afterwards were happy too (about when they found out..because it was the best time for them) - so God knows what he's doing! In hindsight -- of course, I wish I had been able to enjoy my pregnancy more...had I know the delight, love, joy and wonder Meghan has brought into my heart and mind - well, then it would have been different. But there are no regrets or sorrows about the way things happened! laurie
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Post by meghans_mom on May 12, 2004 10:31:49 GMT -5
Amy - Meghan was my first child, and with matthew...her little brother - I decided to have an amnio because I just needed to KNOW if there was anything. I think I was more worried about spina bifida than DS occuring w/ him, and needed the peace of mind - not that it would have made a difference...I was keeping the pregnancy no matter what. The risk was there w/ the amnio, but my Dr performed it himself - he's a high risk doc and has done 100's of them - and his stats for miscarraige were way lower than the average...and then I went on bedrest for 3 days afterwards. I wonder if we're ever lucky to have baby #3 if I will go for an amnio again...can I keep being so lucky with them? But we won't cross that road for a few years, if ever. ok -- i've said enough (for now, LOL) laurie
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Post by jeannette on May 12, 2004 10:42:12 GMT -5
I would like to add............... Our decision not to have an amnio is also due to the small risk of miscarriage. It took us 1 1/2 yrs to conceive and we weren't about to take even the smallest risk just because of our age, only if some medical issues arose. If we do decide to have another child my risk is even greater due to already having a child wl DS and my age. I am 36 and so is my husband so as you see our clock is ticking. As of now, we're not thinking about it, we're just enjoying our true blessing from above. MeKyah is such a joy. She's 6 months today!!!! Jeannette
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Post by shellk on May 12, 2004 11:00:49 GMT -5
Amy, I like Connie did not know while pregnant but, inside I knew there was something wrong..I had really odd dreams..Like one where my older daughter and I were at this pond and in the pond there wa a girl fish who didn't look like the others and my daughter and I took her home to protect her from the other fish..This dream I had from about 4 months till almost the end at least once a week I had this dreem..I donated myself to an ultrasound school during my 8th month and the ultrasounded my belly for like 45 minutes watching the heart and bladder and things like that and I also had numerous ultrasounds because I kept having false labor..No tests I had or ultrasounds raised any flags and I myself was only 27 so they saw no reason for an amnio...But, the moment they laid her on my chest I knew she had DS..I think that night in the hospital I had my on personal ephiany (sp?) and swore that I heard a voice telling me that I could do this and things would work out. Strange but, I went to the nursery and asked when they were going to tell me she has DS and the nurses said they could not confrim...so I demanded to see a neonatologist and she looked at Kourtney and agreed with the physical features and immediately did the chromosome test...The rest is history...I am not sure if knowing would of made it better or worse..I would like to think that even if I did know before hand that I would of been okay. But, I will admit when I saw her I was totally shocked especially since her dad and I were not married at the time and had only been dating for 1 year when she was born....But, now we are one big happy family and when my son Jason came along 8 months ago we opted for no amnio when we were in the office to have it sone and the doctor told us there was no red flags to indicate possible DS my DH told him no way you sticking that needle in there and possibly injuring my boy...
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Post by Connie on May 12, 2004 11:56:31 GMT -5
Michelle, Like I said before I knew something was wrong but could not put my finger on it. I also, had other things go on that led me to beleive something was not right. First, the ultra sound which did not show anything. I watched it over and over trying to figure out why somehthing just didn't feel right. Second, the heart beat dropping to 120 and below in the 25th week of pregnancy. Third and final. The day I went in to the hospital to have him my husband and I were waiting to register (preregistation is another story...just don't get it). There sat a young man with DS helping valet park and my husband asked or stated..."I wonder what that would be like...having a child like that?" I told him I didn't know but couldn't think about it right now because I was in labor. When we got to our room and settled in my husband being a "MAN" started flipping through the tv channels while waiting for me to get really started. He stopped on Maury Povich and "OUR SPECIAL CHILDREN". He was interviewing parent of children with special needs and the children. Collin was born 3 hours later. I really beleive it was God's way of preparing us. Strange to think how things happen ?!?! Connie
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Post by DereksMom on May 12, 2004 12:03:34 GMT -5
I had no idea there was anything wrong with Derek before he was born. I had an ideal pregnancy other than a bit of spotting at the beginning. Im glad that I didnt know on one hand but it would have been nice to prepare instead of having the world come crashing down around me after his birth (air vac'd to childrens hosp, 2 heart surgeries, 6 weeks away from home). I also had an ultrasound a month before Derek was born and there was nothing picked up on it even though he had a very bad heart defect.
Hugs
Allison
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Post by Rhonda3 on May 12, 2004 13:11:18 GMT -5
I didn't do any of the blood work testing that they offer early on in the pregnancy. At my 20 week sonogram we found out we were having a boy and that he had a heart defect (AV Canal) and also the possibility of having Down Syndrome. We were sent to a high risk doctor from then on, but we decided not to have the amnio. done. Even though we weren't 100% sure he was going to be born with that extra something special we started preparing our selves by reading and finding a couple of great forums (umomas) which really helped a lot. I enjoyed hearing stories about everyones special children and how much they were all loved!!
Rhonda and Dylan 12 months
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Post by Alice on May 12, 2004 14:03:06 GMT -5
Amy, I love these questions, thanks. It is so nice to see what others think. I asked them myself 1,000,000 times. I could find out it before, because I was over 35 and refused the test for many reasons: chance of miscarriage, wrong result, to face the hard decision, and just to have good pregnancy and not nervous what it is DS baby and so on. I do not think that I could be prepared it would be the very stressful pregnancy for me and for the baby. If I decided not to do the test that time, I am sure it was right decision for me and my family. Luke was born as a very healthy boy and his score was 9.5, which is high. Sure we had terrible shock after we found out. I still have the pain of remembering that time... Any way, we are glad we have Luke, he is light of our big family, we are still making one step at a time to get a success in delays areas. That is my thoughts.... Alice p.s. I decided to add this after reading other posts. I had some strange feeling while I was pregnant that baby is having DS. I do not know why may be because my former doctor pushed me so hard for an Amnio and I remember her words: "You have good chance to have a baby with DS, because of your age". I tried to reassure her that age is nothing, that my grandma had my mom at age of 40 and my aunt had my cousin at age of 43 and no one had DS. She said that for them it worked that way and for me it could be different. I was so upset (cried) and we decided to change her for another very good doctor, but we could not change anything what was going inside of me...
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Post by Chris on May 12, 2004 14:39:27 GMT -5
I was OLD when I had Sarah so my ob insisted that we visit a geneticist for a 16 week ultrasound and amnio. I was absolutely, 100% sure that I would never have an amnio because of the risk of miscarriage. During my ultrasound, they found that Sarah had an increased nuchal fold. The geneticist said Sarah had a 20% chance of having Ds. I still refused the amnio since she had an 80% chance of being normal. The geneticist strongly advised that I have the amnio since we could better prepare for her birth. I left feeling so strongly that my baby was absolutely perfect. We had to walk a couple of blocks to get to the car and suddenly I HAD to know! Hmmmm......I believe that "strong feeling" was God speaking to me. I called the office as soon as I got home and scheduled an amnio. The amnio was incredibly easy and painless. By the 18th week of my pregnancy we got the call from the nurse that was had a normal, healthy baby girl. HA! I knew that doctor was wrong! I called and emailed everyone and shared our good news. The next day was my husband's birthday and the phone rang at 3pm. It was the geneticist. She wanted us to meet with her in her office. I said just tell us what you need to share. Then she said, "I'm not sure you want to get this news over the phone." My heart sank. I couldn't wait another day to hear what she had to say. She said they didn't see the extra 21st chromosome when they evaluated the initial three cells. Then when they were able to look at cell 4-10, they found that she had trisomy 21. At first they thought she had Mosaic Ds but when they looked at the first three cells again, there was an extra chromosome. Duh!!! My husband was absolutely furious and I was crushed. I mean, they were specifically looking for that extra chromosome, that's why we had the amnio! My husband never shed a tear but he still hasn't forgiven the doctor. I shed a few days worth of tears but figured I was just feeling sorry for myself, the baby would be fine. I always knew she was a blessing. God gave us a huge surprise when I became pregnant! Two weeks later, we had a fetal echocardiogram and found the baby had an AV canal defect. We had to change ob's and hospitals. The hospital I delivered at could handle babies with serious conditions. I had a weekly stress test and a ton of ultrasounds. I also had insulin dependent gestational diabetes. I was so busy with doctor appointments. I read a ton of literature and websites about Ds. I was terrified that she would die. I was afraid to buy anything for the baby but some church friends insisted on giving me a shower. I feel it was a blessing to know before she was born. After she was born, we were as jubilent as any new parent. There were no tears or feelings of sadness. We were in awe watching our beautiful daughter. We had two fabulous months to enjoy Sarah before she started having heart failure and becoming so ill. I am so glad that those months weren't wasted mourning about her Ds. We were so well bonded and that helped prepare us to take care of her for the next very difficult months. God knew what we needed. For those of you that had so many ultrasounds and blood tests that never hinted that anything was wrong, God knew you needed to wait to find out. Everyone I have ever talked to felt the timing of their finding out was the right time. Thanks for letting me share! Chris
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Post by Alice on May 12, 2004 14:53:09 GMT -5
Chris, You are so right: "Everyone I have ever talked to felt the timing of their finding out was the right time." Thanks for your story, I cried... Alice
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