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  • Sister-in-law w/ DS pregnancy

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    Old 04-29-2004, 10:32 PM   #1
    nanamary
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    Question Sister-in-law w/ DS pregnancy

    Last week my SIL amnio results came back positive for ds. She is 20 weeks and with a baby boy. She is 40 yrs old. We are a very close family and live next door to each other. She and her husband will have all the support they need. After getting through the initial shock we immediatly began researching ds. We have already bought a couple of books and done tons of research on the internet. On May 18 she is going for another level II ultrasound to check out the heart. During the first level II ultrasound the Dr. told her all the limbs measured normal. I have a few questions that I believe only experienced parents/family can give. By the way, she works a 50 hr/week job as a retail mgr. I just don't believe she will be able to return to that demanding job, I could be wrong. First, how normal is the first year of life. Do ds parents normally return to work after 12 week medical leave? (She was already planning on taking the full 12 wks of medical leave) I just can't see putting a ds baby in any kind of daycare even if they offer special needs. What kind of tests are done to see what kind of ds the baby has and how early? I know that there are three types. Trisomy21 being the most common. How early can you tell how mild or severe their ds is? Are babies that have more prominent features more likely to have a more severe case? Any answers will be greatly appreciated. We are blessed to have our Aunt who lives across the street who has her masters in speech therapy and works at a state hospital with ds patients not only in speech but also swallowing therapy and p.t. Which by the way she didn't decide to go to college in this field until she was 32. God plans everything. We are all so excited about his arrival even with ds.

    Much Faith,
    Mary

     
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    Old 05-01-2004, 09:16 AM   #2
    Jaber
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    Re: Sister-in-law w/ DS pregnancy

    Hi Mary,
    First of all I'd like to suggest that you get the 2nd Edition Babies with Down Syndrome book. The most informative I've read regarding my infant. Also, when researching other books, make sure that they have a recent copyright, books written 20 or more years ago treated DS VERY differently than it is today.

    At the level II ultrasound they will look at the baby's heart because 50% of all Downs babies have heart problems and will need to get surgery by the time they are healthy enough for it.

    Regarding to returning to work f/t, I was going to, but when my 12 hour shift work job wouldn't let me work different hours I quit. It truly depends on the baby's health as to if your sister can do it or not. In my daughter's case, (she's now 11 months old), she has had chronic ear infections and the usual thyroid, heart, and hearing evaluations and I personally don't know how I would have done it if I was working full time. It's a lot of Dr. appointments. But, it really depends.

    They will probably take a blood test after the baby is born to determine the type of Down syndrome the baby has. And it may take years to know the severity of the DS. Some cases you can tell if the baby will be high functioning, or on the more severe side. Or it may take a while.

    Quote:
    Are babies that have more prominent features more likely to have a more severe case?
    I don't believe so.

    Can I also suggest looking into your Early Intervention program through your county or state? The earlier you can get your infant into this program the better off they'll be. It depends on your state/county as to how good the program is but the baby will receive special ed. services, p.t., o.t. , and/or speech pathology among other things. Good luck and let me know how things turn out!

     
    Old 05-04-2004, 12:31 PM   #3
    Chayce's mom
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    Smile Re: Sister-in-law w/ DS pregnancy

    Hi Mary,

    Congratulations to you and your family. My son Chayce is five years old and has nondisjunction trisomy 21. We did not know this until after he was born. I was only 25 when I had him. Chayce developed pretty normally the first six months of his life. It wasn't until the big milestones should have occured that we saw him fall behind our friend's children of the same age. He didn't crawl until 18 months and didn't walk until 22 months.

    I worked the first two years of Chayce's life. I did have to cut back my hours due to his early intervention therapies (three times a week) and all the doctor appointments. Chayce has been very healthy, no heart or intestinal problems but you still have to see the doctors to rule it out. Chayce also had problems with his ears and had tubes in and adnoids out at 18 months. I agree that Babies with Down Syndrome is a great book.

    I can't remember all the doctors we saw the first year but I'll do my best. First we saw a geneticist and they went over what type of DS Chayce has, then they gave us info. about the most common medical problems in DS people. We saw a cardiologist and had EKGs and ECHOs. We saw an ENT and an eye doctor. Chayce also had a swallow study and a Brain stem test for hearing.Chayce saw a developemental pediatrician to monitor his growth and eating habits. His pediatrician had blood work done for thyroid and white blood cell count (CBC). I think that is about it. Chayce now sees his eye doctor and ENT twice a year, his developemental peditrician yearly, and his regular peditrician does a thyroid and CBC yearly.

    Chayce goes to school four times a week, he will go to kindergarten next year. He will have his own aide at kindergarten. Chayce is doing very well and has excellant gross motor skills. His fine motor skills and speach give him trouble. He is a very happy and loving little boy. Chayce definately has mild DS features compared to the other DS children I know but I don't believe there is a correlation between features and ability.

    I hope this helps and I wish your family all the luck and happiness in the world.
    __________________
    Jessica

     
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