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Post by Cbean on Apr 17, 2005 8:13:22 GMT -5
Oh my gosh Susan! I asked the same question!!! "Can you tell how severe it is?" But even more ridiculous is the bozo perinatologist (Dr. Eveeel) actually tried to answer that question by explaining that sometimes we can tell by the markers in the Level II test!!!
This is why I am so glad to see that politicians are working on the Prenatal Act. I know there is another link going on about this and I don't want to get into all the semantics of it, but something does need to be done for the families who are learning about the DS diagnosis prenatally. It really blows me away to see the lacking and inconsistency of the information that is being given out by doctors.
I'm not checking my grammar and spelling here as I gotta run!
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Post by shaye on Apr 17, 2005 8:32:13 GMT -5
When Hunter was born, his ped had come in to talk to me about his O2 problems, and "in passing" said that the nurses wouldn't let up on something be off in his eyes. When he saw a newborn picture of my other son, he (and us) didn't really think results would come back DS- Guess Hunter fooled us. I asked him to call me at home when he got the results, and he did-and let me cry on the phone to him for a while. He also said that when I was in the hospital he had a nurse practitioner who specializes in DS come do all sorts of measurements on him-none of which allowed them to say he certainly had DS. (he said I was so stressed in the hospital that he didn't want me to have a breakdown there telling me about her- Believe it or not, I was glad he kept it a secret) No one said anything upsetting to me. No one said sorry- everyone was very supportive. When I hear stories from others it makes me so sad (and mad) how insensitive "professionals" can be.
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Post by donnita on Apr 17, 2005 12:07:30 GMT -5
My OB was on vacation so another OB from his office delivered Cassandra. After the delivery, she was cleaned up and handed to Guy. The OB asked if he could hold her again and we let him. I know now that he was checking out her neck but he, nor the nurses, said anything about Ds. The nurses were surprised that her APGAR scores were both 10s, which seemed odd at the time. After he handed her back to us, they left the room. By that time my mom and two of the older daughter (and two or their friends) had come into the room. Cassandra cried at some point and I saw her little eyes slant! I looked at my mom and said "she looked very oriental just then" and I could tell she thought so to. Guy pointed out the the older three girls (my step-daughters) all have almond-shaped eyes and I didn't say anything about Ds then. Then Guy decided he had to go outside to smoke. About 3 minutes after he left, the ped on call from the Children's Clinic came into the room and said he needed to talk to us about some characteristics he noticed. I'm still not sure if he had even seen Cassie before he came into the room (I don't think anyone ever took her out of the room) or if he was just going on what the OB told him. I told him to wait and we would get Guy back up there. While one daughter went to get Guy, I stared at Cassandra and realized that it didn't bother me. I remembered that several years before, I had told God that if I had a child with a disability, I wanted one with Down syndrome. By the time Guy got there, I mostly just felt sorry for the ped that had been standing there for 10 minutes waiting to break the "bad news." He was very nice and I don't remember him mentioning adoption at all. Guy took it much better than I thought he would, although he tried to rationalize all the characteristics in some other way. He had never been around many people with disabilities before. So there Robin, Susan, and Cathy, I do have one "good dad" memory! At her one month, they noticed her heart defect, which I agree, was harder to take than the Ds diagnosis! I'm sure that if my regular OB had been there, he would have told us himself. I felt sorry for him too, he was very upset with himself that he missed her heart defect on the ultrasound. He asked me to bring in the videos of the US so he could see them again!
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Post by Chris on Apr 17, 2005 14:02:01 GMT -5
I've told this story numerous times on this site .........here we go again!
I was very old when I got pregnant and my ob insisted that I go to a geneticist. During the visit with the geneticist, I had an ultrasound and the nuchal fold measurement was slightly thickened. The geneticist said that the baby had a 20% chance of having Ds. She wanted to do an amnio but we refused. As soon as I left the office and got in the car I had an overwhelming feeling that I needed to have the amnio. I called back and scheduled to have one the next week.
I was so nervous about the risks involved with the amnio and wasn't too thrilled about having a huge needle in my belly! I was pleasantly surprised that the amnio was not at all painful, I have blood draws that were much worse.
The wait to find the results really didn't bother me too much since I was confident that my child was just fine. My dh and I are both teachers and were on spring break when we got a telepone call from the nurse at the geneticist office. She told us that we had a normal baby girl! I was thrilled and called and emailed all my friends and family with the good news. Dh and I went out to celebrate our good fortune.
Later that week, on my husband's birthday we get a call from the geneticist. She said she wanted us to come to the office. I asked why and she said I probably didn't want to hear her news over the phone. I insisted that she tell me. My dh got on an extension and she told us that they made a mistake when they read the first few cells. When they tested cells 5-10, they found that the baby had an extra 21 chromosome. At first they suspected Mosiac Ds but when they looked at the first four cells, they also had the extra chromosome. She explained how difficult it was to map out the chromosomes....blah, blah. In a nutshell, she had Ds and they made a mistake.
I let out some gut wrenching sobs and my poor Dh just tried to console me. He never shed a tear. He was so very angry at the nurse who called us with the incorrect info. I guess he had to be mad at someone.
When we did visit the geneticist, we were informed that we had x amount of time to schedule a "termination", if we weren't comfortable with that option, we could put her up for adoption. Oh, yeah, there was one more option, we could keep our daughter. Then we were told that children with Ds are living longer lives and doing more than in past generations. My dh was disgusted and told the Dr. that we would be keeping our child. Duh.
My ob was very sweet when I saw him after finding out about the Ds. He said he was happy that I decided to keep my child.
It is ironic that I read this post today since it is my husband's 50th birthday and the 4th anniversary of getting the news of Sarah's Ds.
Chris
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Post by kellyds on Apr 17, 2005 14:19:31 GMT -5
How old were you when you got pregnant, Chris? I gave birth to Joshua eight weeks ago, and I'm 45. I'm just wondering if I qualify as "very old" yet. How horrible it must have been for you to get an "a-ok", followed by a "not really".
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Post by Chris on Apr 17, 2005 19:24:35 GMT -5
I was 43 when Sarah was born. All the doctors talked about was my advanced maternal age. I really didn't feel all that old at the time! No one has ever asked if I was Sarah's grandmother but they have asked if my husband was my father (he's only three years older than me). Chris
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Post by jonpaul on Apr 18, 2005 7:31:09 GMT -5
When my wife went into early labor, an Ultra-Sound test at the hospital revealed a "double-bubble" sign for Duodenal Atresia. The doctors explained to us that the baby would require surgery right away and that there was a high probability the baby would be born with DS. While waiting in the recovery room after the C-section delivery, the Chief Neonatologist came to us and first congratulated us on the birth of our beautiful baby boy. Then, he told us that he has DS and that chances are good that our son would lead a fruitful and rewarding life. Nobody ever mentioned adoption to us....maybe the hospital staff sensed that is was never an option in our minds.
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Post by Alice on Apr 18, 2005 7:48:08 GMT -5
Frankly, I do not want to remember that days.... If I could turn my time back, I would prefer that doctors, nurses, and Social worker treated us differently than they did that time.... The funniest part of that days was when we had a breast feeding specialist who could not run my milk just brought me in terrible pain, after my ouch scream I taught her the way it should be. My DH had hysterical laugh after The breast feeding specialist walked out. My dear husband was the first one who's got the news: the pediatrician told him that he wants to run a blood test for DS, and seeing that my husband's face getting pale - he just offered him a chair and walked away. How nice?! OMG, how medical people can be cold to their patients? I should give credits to the nurses at NICU, they took good care of our son and us. Thanks to them because they were first people who said that nothing is wrong that our baby has DS Some day, I want to be a volunteer to help new parents at hospitals to cope with unexpected news. If doctors are saying that something wrong with your child and that mean DS, I am sure something is wrong with that doctors' sole.
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Post by Claire on Apr 18, 2005 8:27:00 GMT -5
I started having problem with early contraction and other stuff during my 4th mth of pregancy. They sent me for ultra sound to a specialist that said he though te baby was DS. They were checking for atresia of the stomach. I went in premature labor at 5 mths and was flown by air abulance at 2 minutes apart to Toronto which is a 10 hour drive from our place. I stayed their for 3 mths on bed rest and then, when it was safe for him to be born in a Neo-Unit 4 hours from home they transfered me there. The hardest part was being away form my family for all that time as we really couln't afford for any to visit. When Adam was born I still had hope that they were wrong since I had refused the amnio. When he was born it was not a shock as I had read everything I could get my hands on to get ready fort his little boy. But the way everyone else in the room was when he was born just discusted us.. A counsellor told us we had 4 options. 1- Give the baby up for adoption 2- Leave the baby there until we had made a decision 3- Foster care until we decided on keeping the baby or not 4- keep our naby and they would help us
I was so mad I told her " Good thing this isn't my first child and I am not an uneducated young mother. The first thing out of your mouth should have been "If you decide to keep the baby we will help you" That si all that was needed. I told her to leave and that we had already made the decision a long time ago that we would keep our child no matter what. I sure didn't spend 4 mths on my back in a hospital because we didn't want him. As if!!! But one thing I remember is getting so many flowers, like it was a funeral or something. No-one did that for my other 3.
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Post by jeannette on Apr 18, 2005 9:28:16 GMT -5
Okay, I'll try to be short. I think I've mention this before anyways. Well, I had a normal pregnancy. I only had the level II ultrasound and it was normal. The doc said we had a healthy baby girl. That was music to our ears. We always news that this was not 100% but I was not about to take an amnio just because of my age. If something had of shown even the smallest medical problem, then I would have taken it so the doc's would know what they would be dealing with.
I had a good labor and delivery. After she was delivered, the docs said they didn't want her to cry as she had moconium asperiation(sp), basically, she made a bowel movement in the sac. So when they first took her to the table, they said dad come on over but then after a short moment they sent him away. My heart sunk. We kept looking and I was like holding my breathe until I heard her cry. They brought her over to me briefly to kiss her and said they wanted to take her to NICU for precaution. Well, all was well so we thought, I was sowed up and getting ready to eat. My husband had stepped out to an area to use the cell phone to call my twin sis & mom whom were in route to tell them the great news. Well before my hb gets back the NUIC doc comes in and starts telling me that our baby was very very sick, she had pulmonary hypertension in the lungs. I immediately started crying and he went on and then one of the nurses said, hold on, let them go get my hubby. When he comes in, the doc then tells us that she has features of ds. Well then I cried some more. No way, just no way, my child had ds. They said we can see her after about an hour. When we did, I thought, there mistakened, theres no way she had ds, after all I saw her and she did not look like it at all. They did a chromosome study to confirm she had Trisomy 21. This was very hard to accept but once we did and got educated, things were alot better. My baby had to fight for her life but today she is a happy, smiley little girl. She is always smiling and usually puts a smile on everyone's face she encounters.
We are soooo pround of her. She says bye bye appropiately and now she just started saying stop. I was dressing her and she wanted to get to everything so I said stop and to hear her memic me was a true treat. We were so tickled.
These are some really great post.
Jeannette
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Post by Valerie on Apr 18, 2005 10:49:07 GMT -5
I don't remember one defining moment. It was never mentioned until he was 7 wks old, when we were at the cardiologist and found out about the AV canal defect and that it was almost ALWAYS found in babies with DS. Then we waited until they did his PA banding at 3 mos to get the blood for the test, so that's when we found out for sure, although we already knew he probably did. I do remember asking in the hospital after he was born why his reflexes were a bit slow. At the time, they attributed it to an infection he was born with. He didn't have all the "features" of DS at birth. He does not have the Simean creases, no gap between his toes. His eyes have more of the "slanty" look as he gets older, but as an infant you didn't really see it. And at first, he seemed pretty on target, started rolling over both ways before he was even 3 wks old. So we honestly did not even have a CLUE until he was 7 wks old. But NOBODY ever had any bad comments or any suggestions about us not wanting him. All his Dr's and both our families have been nothing but supportive. He has definitely captured everybody's heart!
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Post by carolyn on Apr 19, 2005 6:21:53 GMT -5
My story is kind of a combination of many of these. We had a level II ultrasound and while we suspected something was wrong when like 5 doctors came in to read it, we just held our breath. They said everything was fine.
The delivery was super, in labor for just over 1 hour and delivered him 20 minutes after I got to the hospital. The first ped. said he was fine. The next day another ped . came in and asked if he looked like my other children. He certainly did. She told me she was a tiny bit conerned about his low set thumb. Maybe we should be a DS test, just to ease her mind. She said she felt like a 2% chance. He too has no simian crease or space between toes. Also no heart defect. Just the little bit slanty eyes. Anyhow, the nurses seemed more sure, we were crying and wonder what the heck, and several nurses told me how they label some babies as a bit "funny looking" and sometimes they know more than the doctors. John was very jaundiced, so he spent a lot of time under the lights and that was the WORST part as I could not hold and love him like I wanted. After maybe 2 days ( we were up in peds finishing up the bili light treatment) they broke the news. My own ob/gyn was useless, I changed dr. after that as I felt totally abandoned and why total strangers had to deliver the news....But it really has turned out okay in the end. That said, I am appalled at the behavior of my Ob, how he seemed more concerned that he hadn't suspected anything than how we were actually doing. In fact, the ped who delivered the news, not my regular ped as we delivered in a hospital my guy did not have service at, told me my Ob wanted him to wait a couple weeks before telling me so I could adjust. The Ped was like " that is cruel to make her wait, so he told us anyhow" UGH! Just thinking about it makes me so mad. I had known my OB for 8 years! What a wimp !
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Post by carolyn on Apr 19, 2005 6:25:13 GMT -5
I forgot to mention the geneticist was a monster. OMG. She should not have a license to practice. Thankfully she had an assistant who was wonderful and nice and had a heart. I really do hate to think about those days as for some reason the people who treated us so bad seem to bring up more emotion than the many people who were wonderful. Human nature I guess- the bad stuff just stings for a long long time.
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Post by Renee' on Apr 19, 2005 6:35:46 GMT -5
I was pretty sick early in my pregnancy and required around 8 ultrasounds. At 21 weeks I went in and had one. The tech noticed something "not suppose to be there" and she took the photo to the doctor. Chris and I returned to our exam room and the doctor came in holding a paper. He said be at the hospital tomorrow. You will need an Amnio. Your baby may have something wrong because we just found ecogeneic bowel. So the next day I went and had an amnio. It was coming on Labor day weekend. Friday we received a call from our doctor. He spoke with my husband and said your baby will have Down Syndrome. Do you want to know the sex? We didn't up to that point but Chris said yes. So we had until Monday to make the choice to abort or keep our baby. He had to call us because it was late Friday and I would be 22 weeks on Tues. Our doctor was fantastic. He was so supportive and even gave us the name of another family he delivered 11 years prior. I was crushed but my sweet husband said she is our baby...now lets learn all we can and give her everything we would any child. Today she is a wonderful, healthy, HAPPY and stubborn 6 year old. Just ask her She will tell you she is "Princess Lauren"
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