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Austin's Mom 07-14-2001 11:08 AM

Knowing if my child has Down's
 
Hello everyone. I am writing on regards to my sister. She had a baby 4 weeks ago and we are noticing some features of down's. We see the widening of the toes, the thickness in the back of the neck, somewhat squinty eyes. Anyway, we wanted to know if anyone has had a child with down's and not know until some time later, like this. Please anyone answer and let us know. My sister is really concerned. Please let us know if this has been the way for anyone else. Thank you soo much.

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Sheri

Tifferbelle 07-17-2001 03:38 PM

We didn't know about Audrey until she was 5 days old. We wouldn't have found out then if it hadn't been for her heart. She was obviously very sick and the doctor sent us to a cardiologist. The cardiologist at the hospital suspected Down's and sent for a geneticist to confirm. But had it not been for the medical problems we probably wouldn't have known for some time. I've heard of doctors with a "wait and see" attitude. They feel that if the child shows delays then they will order a blood test.Of course it's best for the child to begin early intervention as soon as possible before the delays are even apparent.Audrey started EI at 6 weeks. If there is any concern about DS, I think a baby should be checked sooner than later.Besides I'm sure it's hard for a new mom to have a question like that hanging over her. It's best just to find out and move on from there.

Tiffany

Austin's Mom 07-18-2001 08:34 AM

Tiffany,
Hello again. Thank you sooo much for answering. I was beginning to wonder if anyone would. Anyway, my sister did get the doctor to order a blood test. She just had that done yesterday so we should know by the end of the week they said. Was your daughter still in the hospital when you found out? And did she not have any characteristics of downs or were the doctors just oblivious? How is she doing now and how old is she? I know this all may sound silly. Anyway despite the doctor not wanting to really order the test he did. So I guess I'll keep you posted. Again thanks so much. I look forward to hearing from you soon. May God Bless.

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Sheri

Tifferbelle 07-18-2001 03:46 PM

I guess the doctor was oblivious. Although in her defense, Audrey had a difficult delivery so her face was swollen and bruised. However, she did have the thick neck and the one crease on her hands.We took Audrey home confident that we had a normal healthy baby. Unfortunately she wouldn't eat and she was becoming jaundiced. I kept calling the doctor's office and talking to various medical assistant and doctors on call. They all assured me that it was normal for a newborn not to eat for a few days as they are fatigued from delivery. This was my second child though and I just knew something was wrong. Finally on day five my husband and I took her in and demanded to see the doctor. She knew right away something was wrong and ordered and EKG. The EKG showed a heart abnormality so we were sent straight to the local children's hospital. That was where she was diagnosed. We were there for 5 days. They were not very positive at the hospital, emphasizing all of the things she wouldn't be able to do. Audrey had open heart surgery (at a different hospital) at 4 1/2 months but continued to be fed through a feeding tube until she was 2 1/2. If there was anything good about our early experience it's that we learned right from the start that we would have to be aggressive in seeking medical treatment and services for our daughter. Today Audrey is a healthy 7 year old. She will be starting 1st grade this fall mostly in a typical classroom with an assistant. Despite her earlier health problems she is very active and involved with swimming, gymnastics, horseback riding, and skiing. She has recently started to read which has been very exciting for us as we were told that chances were against her ever reading. Please keep me informed on the results of your sister's baby's test. I wish all of you the very best.
Tiffany

Nanc 07-18-2001 08:47 PM

Hi,
We didn't know that our daughter had Down Syndrome until she was 3 months old. She had jaundice when she was born, and when we brought her home, I could tell she was breathing heavier then I thought she should. So we were sent to a large hospital, where they did an EKG and thyroid tests. The tests said everything was fine, so we took her home, and just thought that it was the way she breathed, and didn't really think much more was wrong. She didn't cry hardly at all, and she wouldn't take much bottle, so I was concerned and took her back in, but the doctors couldn't find anything wrong. So then at her three month check up, the doctor noticed she couldn't pick up her head like she should , and she wasn't the weight that she should have been, so they sent us in for further tests. They did the down syndrome tests, we waited 2 weeks, and they also started running other heart tests, and kidney tests ect... They found she did have down syndrome and a VSD and an ASD. Which she had repaired when she was 5 months old. She started growing stronger and stronger once the surgery was done. Today we just took her to see the cardiologist for a check up . They now have found she has a mitrovalve back leakage, and also the aorta valve is backleakage into the heart. But so far, it isn't causing her stress to the body, so we are going to just monitor her closely. If she starts showing any signs of heart failure then they will do something , but for now, it isn't bad enough. They told me that VSD and ASD are not as common in Down Syndrome as the two problems that she now has is. Has anyone out there had a child with the mitrovalve problem or the aorta valve leaking. Just small holes right now, hopefully wont' get any worse. I love this kid more then anything though. She is nothing but joy in our life. God truley blessed us with her.

Tifferbelle 07-19-2001 12:05 PM

Yes, Audrey also has the mitral valve leakage. She had ASD and VSD. That was what was repaired when she was a baby. She was about a year old when we found out about the leaky mitral valve. Same as you we were told that it wasn't bad enough to worry about but could get worse as she grew. That was six years ago and the leakage hasn't gotten any worse at all. We just saw her cardiologist last month and he said we could wait two years for her next check up. I've finally quit worrying about it.

Kennedy 07-21-2001 07:16 PM

Do this..... take the babies hand palm down.Push it backwards in an L shape as if you were trying to touch the fingers to the elbow backwards.If the baby only has one fold there at the wrist it is a atrong sign.We all have numerous lines and folds there and that was what they noticed about my daughter first was the wrist that she only has one line.Thats the most common thing to see.


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