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Post by Cathy on May 12, 2004 15:14:03 GMT -5
Okay first of all..Chris, you were not OLD.. I was when I was pregnant with Katie.. sighhhhh and I am getting much older much faster since her birth!
Being as I had Emily when I was in my thirties (ROFL I was 39) the doctors wanted me to have an amnio but I refused, because at that time in my life I wanted a baby no matter what. I felt that the risks of the amnio were not worth the risks of having a baby with DS. I did have a level three ultrasound because of MY ADVANCE MATERNAL AGE! It came back fine.
Then when I got pregnant with Katie... I did the same thing. Only her ultrasound came back with a "Soft sign" of DS. Being the length of her upper arm. But the geneticist said that it did not increase my risks of having a child with DS because my risks were fairly high because I was old!
You know, by the time Katie was born I had very little self esteem...all this talk about me being TOOOO old. Anyway, I digress, after her birth the doctors gave me a strange look and decided that they would run the gene screening. The doctor was so darned wishy washy... first.. we are doing the test, but we do not think she has DS, then well maybe she does, then no, then yes...it was the longest most grueling two weeks!
When we got the results back they said.. "Katie was consistent with DS" What the heck does that mean? It took me another three days to hear the words..."YOUR DAUGHTER HAS DOWN SYDNROME"
I was sad, confused, happy and conccerned. THankfully she was pretty healthy and didn't have any immediate medical needs! But if I were to do it again, I would definitely have had a fetal echo done, maybe then the DRS would not have missed the ASD she had! She had an echo about 2 weeks after she was born, but the brain surgeon of a ped we had said it was normal... but again I digress!
I am also of the opinion, that I am glad that I did not find out until after she was born, not that I would have ever considered abortion, but I would have worried myself sick and then would not have enjoyed the pregnancy!
Hugs to you all,
Cathy
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Post by amyzimoski on May 12, 2004 16:21:36 GMT -5
Oh my goodness! thank all of you for your responce! It has really helped me make a decision on if I would allow and amnio. I just loved reading all the stories. Oh by the way...I think that myth about being old and having a better chance at a Down's child is all hog wash. I know just as many so called "young" people with children with Down's as I know so called "old" people that have children with Down's. Now all I have to get over is having a baby and still keeping my job. I am trying to get them to let me bring my new baby to work with me at least until he or she is old enough for daycare. I know some may be frowning upon that but I have had to work two jobs just to support my daughter and myself (since her dad wouldn't, but that's another story). Now I am newly married and trying to buy a house and start all over again. We simply can not afford to live on one income and I am not willing to give up my chance at having another beautiful child. I am down to one job now though ! and maybe in a couple of years we will be in a position to allow me to stay home with the kids. Well I have gone on and on long enough. Again thank you for all the stories! Amy
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Post by christie on May 12, 2004 18:35:31 GMT -5
We found out bout 20 mins. to a 1/2 hour after Christopher was born and for us it was a God Send that we didn't find out till after he was here
Colin and I had discussed when I was first pregnant bout having an amino and his response was yes have one and if anything shows up bad, abort the baby Hmmmm Well I told him I would take his thoughts into account BUT I was the one carrying the baby and I would have the final say. I then scheduled the amino and when I got a bunch of papers from the hospital that they wanted me to sigh in case something went wrong I thought Hmmmm NO way, if I have to sign due to risks, just not gonna happen. So I canceled the test.
I personally had a feeling the whole pregnancy that the baby may be DS, don't know why, just did.
K, Decemeber 2nd comes and time for Chris to be born as I had scheduled a C Section. After he was born sooo many came into my room, doctors, nurses, social workers and such to talk. Colin couldn't be there 24/7 so I would share with him what they passed on.
What I will never forget is the Social Worker mentioned adoption that there was even a waiting list for little ones with DS to be adopted. I feel bad now for thinking this but my honest thougths at that time were, you got to be kidding??? A waiting list for children with DS Hmmmm, I sadly admit I was shocked on that one. But remember that was before I knew much bout DS. K, to try and make this story short which is hard to do, LOLOL When I got home I mentioned to Colin what the social worker said bout adoption and he just sat there listening to me with tears streaming down. Hmmm I was like what Your the one that said abort and Colin looks at me and says thats before I saw, held my beautiful little son
So as I started out saying for us finding out after was a God Send as the baby was not real to Colin till he saw him.
If I had to do it over again I would do it the same way, cause we were lucky and no matter what might of gone wrong we were in a hospital that could handle it all
Just as our kids are all sooo different sooo are we adults, what works for one doesn't mean its the best for another.
Best of Luck to you
CC
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Post by alisonzmom on May 12, 2004 22:57:04 GMT -5
I found out at 19 wks that Alison would be born with DS. Being another one of those "elderly" people ( yes, they do actually list that as one of the diagnoses " elderly multipara " in the coding for the admission!!! ), my OB had strongly suggested I have a chorionic villus sampling done for genetics at 8 wks. Told him no way, I would wait to see if the AFP showed any kind of a problem and deal with things when & if that happened. As it turned out the AFP came back with a 1 in 30 chance of DS, so off I went to have a level 2 sonogram done. That doc saw absolutely nothing to suggest that she would have DS, even told me that based on the sonogram, the actual AFP level, & my age (43 at the time) there was a 1 in 950 chance of DS. I opted not to have an amnio done but as I was walking from that department over to my own to start my shift ( I work at that hospital, & know this doc & his reputation very well ) something made me call over to his office as soon as I reached my area and ask if I could come back & have him do the amnio. That was on a Thursday and on Tuesday morning my OB called and asked me to come in to the office, he needed to talk to me. He told me that the baby did have DS, I don't know who had tears in their eyes first - me or him. Looking back, I am glad that I knew before Alison was born about the DS. It gave us time to adjust and learn more about DS - I lurked in the shadows here for months. We have an 8 yr old neighbor who has DS so that did help to take alot of the fear and anxiety of the unknown away but I still worried about possible birth defects even though nothing showed on the bigillion sonograms I had between that time & when she was born. Funny thing, from almost the very beginning of the pregnancy I sense that there was some kind of birth defect - not DS, but a more physical, congenital defect. When Alison was almost a day old we found out that she had an imperforate anus and had to be transfered to another hospital. While the hospital that she was born at has and intensive care nursery, they are not set up to do any kind of surgery, just able to care for extremely premature babies. Strange isn't it that this was the thing that nagged at the back of my mind from almost the moment I realized I was pregnant!
Barb
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Post by Ericsmomma on May 12, 2004 23:06:28 GMT -5
Evening all; I didn't find out Eric had Downs Syndrome till about 3 weeks after his birth. He was a premie...31 weeks, and weighed 3 lbs. He was in intensive care for 39 days. He was seen by 3 neonatologists, and none of them suspected. Then the chief neonatologist came back from vacation and immediately after seeing Eric she ordered chromosone studies. Some of the nurses had their suspicions, but didn't say anything to me or my hubby. I had worked in the unit for 12 years, so these were my friends. I think they were afraid to say anything to me in case it wasn't true. It was a complete shock to us. I remember crying for 3 days. I could hardly get out of bed. I knew when I got pregnant at 46 yrs old my odds were pretty high for downs. I chose not to have the amnio because of my fear of miscarriage. Thats a draw back, but a confirmed diagnosis can be very important especially if there are other health problems with the baby. All I know is that i love this little man to pieces....he's the light of our lives.!! Dolly
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Post by coopersmoma on May 12, 2004 23:38:11 GMT -5
Well I was 26 when I got pregnant with Cooper, I found out there was a possibility at my u/s at about 21 weeks. I was sent for a level II u/s and to see a high risk OB Dr. I was offered the amnio due to the u/s showing some other characteristics of DS, I declined the amnio but the Dr wanted to see me back for another u/s in 6 weeks so by the time I went back in 6 weeks I was about ~28 weeks, They did another u/s that was still showing signs of DS, I again declined the amnio just for the fact I knew I would do nothing regardless of the results!! After we left the clinic that day I thought about my decision not to have the amnio and called them back the following week. They did the amnio that same week and 10 days later it was confirmed that my unborn baby had DS. I was then scheduled 2 weeks later to have a fetal echo to find out if he had a heart defect, it confirmed that he had a large VSD and the Cardiologist told me he would require open heart surgery!!! All my care was transferred to this physician 150 miles away from my home. I had to have Cooper by emergency C-section at 36 weeks due to his heart rate dropping into the 60's. Had I not known that Cooper had DS before he was born I would have delivered in my hometown hospital, which is not equipped to handle sick babies!! My child probably would have died before we could have him airlifted. We stayed in the NICU for a few weeks due to his heart and lungs. I am very glad that I was able to get the diagnosis before he was born. I believe in my case I was able to research DS and the heart defect Cooper had and learn as much as possible before he was born. I think finding out after the fact would have been much harder. Yes, it was a big shock to me that my baby would have DS but I was able to learn as much as I possibly could. If in the future I do have another child I will find out by way of amnio again. There is a small chance of miscarriage, but I was ~30 weeks pregnant and the chance of a baby surviving at 30 weeks is good. I took the chance and was glad.
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Post by Claire on May 13, 2004 0:19:24 GMT -5
We found out in my 5th mth of pregnacy that Adam was DS. I went into premature labor and they sent me to Toronto to a hospital specializing in premature births. They saw it right away with the 3D ultra sound. He was born healthy, but I had to spend the rest of my pregnancy on bed rest in Toronto until he was born because I kept going back into labor. Toronto by the way is a 12 hour drive from where I live, so I did not see my hubby or kids for 3 mths. It was very hard but worth it all the way. When people ask me why didn't you abort, (as it was offered to me to let the labor go and deliver and Adam would not have servived at 5 mths into gestation) I tell them I didn't spend 3 mths in bed cause I felt like it, I did because we loved our child even before he was born no matter what. I was 38 and David was 42 when Adam was born. Now for your question would I have preffered not knowing before I would have to say yes, as it brought so much worry knowing and I really didn't have the time to just enjoy my pregnancy. My niece who was 23 when she had her daughter born with DS did not know ahead of time, and she said that she prefered it that way. She enjoyed her pregnancy more then I did.
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Post by didmyheartgood on May 13, 2004 0:39:07 GMT -5
Hi... I had a very difficult pregnancy, as I was put on total bed rest at 14 weeks. I stayed that way for the duration of the pregnancy with my twins. Even with all the complications and over 25+ ultrasounds, including Level II's, no one caught the fact that one of the boys had DS.. After their birth, I was very angry that no one "caught it" prior to delivery. I thought I needed the time to prepare and that the Dr's should have known. I now realize I just needed someone to blame and be angry at. I now am actually very grateful that I wasn't aware of it, as being on total bedrest would have given me way too much time to think about it and worry about the unknown. I don't think it is easy to hear regardless when you are told. Noone wants something to be"wrong" with their baby. However, knowing what I do now... I wouldn't have wasted one minute worrying! He is the love of my life!
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Post by meghans_mom on May 13, 2004 7:51:06 GMT -5
Amy - thanks for starting this thread...and thank you all for sharing your stories. laurie
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Post by justinsmom on May 13, 2004 10:04:28 GMT -5
We didn't find out until Justin was about 8 hrs old. I had numerous ultrasound and level 2 ultrasounds, I also had an ultrasound prior to the time I was suppose to have an amnio, but because I had the ultrasound they said I wouldn't need it because if there were any problems the ultrasound would have picked any that they were looking for. I wasn't going to have the amnio anyways so it really didn't make a difference. All I wanted to know was if it was a girl or a boy since hubby was insistant that we keep going until he gets a boy (yeah right like that was going to happen lol), so we found out he was a he and that my dad after almost 12 years finally got his JT uggggggggh the man was relentless even went as far with the 2 previous pregnancies to buy boy stuff as if that was going to change what was growing inside of me
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Post by AnnieC on May 13, 2004 12:52:37 GMT -5
We didn't find out till Raven was born. However, her AFP came back positive for DS. So, they scheduled a level 2 u/s & found no markers. We thought the AFP was a fluke. I was 25 at the time, so they felt there was no need for an amnio. But, when she was born there was no question. I wasn't awake at the time because I had to have an emergency c/section & they used general anethesia, but they handed her to my dh & said we are 99.9% sure she has DS. I am glad I didn't know though, I was able to enjoy my pregnancy. I also made the decision of no testing for my next 2 pregnancies & everything turned out just fine. good luck!
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Post by ourangelalicia on May 13, 2004 18:15:44 GMT -5
I knew when she was born, although I had a gut feeling even before that. We got the official results when she was about 8 days old. I am definitely greatful we didn't know before, DH had said that he thought we should give her up for adoption if she had DS.....if I had gone with the amnio I wouldn't be with him today! (He didn't feel that way once she was born, he was just scared he couldn't handle it.
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Post by coopersmoma on May 13, 2004 21:32:23 GMT -5
I failed to mention that my pregnancy was great! I was not sick, I only gained 9 pounds and had no problems! After I found out Cooper had DS at almost 30 weeks I worried about it a little but it also gave me the time to learn. If I would have found out after he was born I wouldn't have had time, he was too sick. I am really glad I found out before and I enjoyed being pregnant even after I found out Cooper had DS.
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Post by Staci on May 14, 2004 9:43:49 GMT -5
We found out after...about 20 minutes after he was born, the doc came in and told us he thought Aidan had DS. But...like a lot of mother's stories, it seems...I just "knew" before that something was wrong. I had a normal AFP, two normal ultrasounds, etc, but I just dreaded delivery day...I knew my life was gonna just totally go crazy...and I was right! It was hard in the beginning, with all of the health probs, etc...I don't think I would have wanted to know while still pregnant with Aidan that he had DS and health problems...I was too young and impressionable (I was 22) and naive, and I probably would have let doctors and specialists talk me into things...you know what I mean...you know how doctors can be with this type of diagnosis. It was just meant to be that we didn't know until after he was born. I found out with my second pregnancy at about 28 weeks that my unborn baby girl had a heart defect. I had an amnio with this pregnancy, because I wanted to be prepared for any medical issues, etc, so I could deliver at a bigger hospital than what I delivered Aidan at...small town hospital...so my dh and I just wanted to know. We found out she didn't have DS, and everything seemed great at first...but then at about my 3rd level II ultrasound, they found her heart defect...the specialist I was seeing told me she wouldn't make it...it was horrible...I basically walked around for a month thinking my baby was not going to make it...what a horrible feeling. I've been through a "before" and an "after" diagnosis...for me, the before diagnosis was sooooo much harder. I didn't have a baby in my arms to look at and to touch and to tell me everything would be ok like I had with Aidan. It was definitely much harder on me, emotionally. But, that's what I mean about doctors...this specialist told me she was going to die...and she's here and she's almost a year old and she's healthy and beautiful...yes, she had open heart surgery a few months ago...but she's alive and for that I am sooo thankful and I just want to take her to this "specialist" and say "LOOK HERE, BUDDY...she survived!" Staci Aidan 9-19-00 DS Parker 5-27-03 Tetralogy of Fallot
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Post by DereksMom on May 14, 2004 17:39:30 GMT -5
I just had Derek at the doc and finally asked him if they had gone back over the ultrasound that I had at 36 weeks to see if they missed anything related to Derek having DS. He said that they had gone over it and the only thing that they would have done differently was to measure the skin fold on the back of his neck. I think that may have been a give away as he had a large skin fold (it has now shrunken), but he said that with a normal ultrasound it is hard to see anything in the heart other than the fact that it had 4 chambers, so a defect like HLHS or HRHS would show up. He also said that it is pretty much just a tool to make sure there is a brain, stomach, all the major organs and the 4 limbs and fingers and such.
Hugs
Allison
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