sister baby was just diagnosed with downs

  1. Hello,
    I am new here and I have lost of questions about downs.
    My sister is 36 and is 5 months pregnant. Her screening test came back positive for downs. Since then she has had her amnio done and she just heard that the baby has downs. Could this be wrong? She is so confused with her feeling on how to deal with the news. She has totally withdrawn herself from everyone and wants to be left alone. Is this normal? I am her older sister but also her best friend. This is so hard on me as well. She said that she wants to hear something positive from someone. What can I tell her that will help her feel better? She said that she feels so selfish because of the way she is feeling. She told me that she didn't think that she could mentally care for this baby but as soon as she thinks that she needs to terminate the pregnancy she feels the baby kick her and then she beats up on herself. I am worried that this is going to make her depressed so bad that she wont be able to snap out of.
    Please any help anything that a could give her to help her.
    G
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  2. 23 Comments

  3. by   Thunderwolf
    moving thread to og-gyn nursing forum.


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  4. by   snowfreeze
    All I can offer right now is Be there for her if she allows that. Then be there for her after she makes her choice. She is gonna need you no matter what happens. God bless.
    As far as Downs Syndrome, I take care of a woman who was high function downs and is now suffering from dementia, that woman is 58 years old. Modern science makes some things seem invincible. She was a functional instructor for other downs syndrome young adults at one time. Whatever the choice, stick with your sister please.
  5. by   SmilingBluEyes
    I would suggest she see a genetic specialist to discuss these questions, particularly about the amnio results...and exactly what this all means to her.

    It would also help to maybe talk to people who have members of their family affected by Down's Syndrome. There are many support groups out there and resources, too.

    Down's varies very much by degree----many are higher-functioning people who are so loving, gifted with kind hearts, and industrious people.

    Your sister needs time to process this situation and then talk with people who can help. I am sorry for her angst and trouble. My heart goes out to all of you-----I do hope, in time, things will look better and that shock, disbelief and heartbreak can be replaced by acceptance and a sense of inner peace with her situation and how she and her s/o handle it from here on out.
  6. by   gthurma
    Thank you everyone that has replied.
    I will always stand by her no matter what she chooses. I am happy to say that I spoke with her yesterday she seemed more like herself. We did not bring up the baby at all. It seems that she is going to give it to God to decide what will happen. I am happy with that choice. I will do everything I can to help her in anyway that I can and I will be looking for all the help I can for her and the baby. I was told that if they can not afford the treatment that the baby will need that she could go to her school district and get state help. Is this true? I want to make sure she gets the best help that we can get for her and the baby. If anyone has any suggestion it would be very helpful.
    We live in the Seattle area.
    G
  7. by   wannabeL&D73
    Genetic counselors really and truly, no matter what their education and good intentions, don't know what it is like to be the parent of a child with Down syndrome. I would really suggest she check out some online support groups or speak to a local support group and meet some parents before making a decision.

    When my son was diagnosed at birth I was absolutely devastated. Now, 2 years later, I thank God every single day for giving me the privilege of being his mother. He has added so much to our family...my marriage is stronger, and my husband and I have never been closer. Yes, there are challenges, but the rewards are so great. And really, parenting him is not so different than a typical child.

    Here are some helpful sites:

    www.nads.org
    www.trisomy21online.com
    www.wonderbabe.blogspot.com

    People with Down syndrome lead full and meaningful lives, they work, live independently, even drive, get married, pay taxes, contribute to their communities. And even if they need more support...their lives still have great value. If your sister gives her baby a chance, she will not regret it. And if she doesn't think she can handle raising a child with special needs there is a very long waiting list of people who would love the opportunity to give a baby with Down syndrome a loving home.

    Shannon
  8. by   wannabeL&D73
    Quote from gthurma
    Thank you everyone that has replied.
    I will always stand by her no matter what she chooses. I am happy to say that I spoke with her yesterday she seemed more like herself. We did not bring up the baby at all. It seems that she is going to give it to God to decide what will happen. I am happy with that choice. I will do everything I can to help her in anyway that I can and I will be looking for all the help I can for her and the baby. I was told that if they can not afford the treatment that the baby will need that she could go to her school district and get state help. Is this true? I want to make sure she gets the best help that we can get for her and the baby. If anyone has any suggestion it would be very helpful.
    We live in the Seattle area.
    G

    I don't know specifically about Seattle...but there is overwhelming support out there! Every state has an early intervention program from birth-3 years that provides PT, OT, and ST. Also, I know here in Florida there is something called Children's Medical Services that covers the medical bills, including co-pays. (But some children with Down syndrome really don't have complicated medical issues anyway, and just need well baby checks like any other child). And when the child turns 3 the school district provides the services. Really, there is so much financial assistance out there...also, they would get SSI (depending on income). Please help her put these concerns at the bottom of her worry list! This baby will melt all of your hearts!

    Shannon
  9. by   jonamb
    I have a brother who was born with severe Down's Syndrome. I can honestly tell you that I cannot imagine life without him. He is the most loving, kind, considerate person that I know. His smile really does light up a room. He does not have a mean bone in his body. My children love him as well. And having been around other people with Down's Syndrome (ranging from mild to profound cases) I can tell you that this is true for every person with DS that I have met. He is mentally 3 years old and always will be (he is almost 40 now). So while he may have childish needs, he also has the innocence and wonder of a small child that I think more adults should have. My mother had a copy of a poem that she found about 20 years ago that I think says it all. It gave me a lump in my throat 20 years ago, and it still does today. I found a copy of it on a web site. Please take a look at it and give a copy to your sister. She may feel overwhelmed and may even be grieving in a way right now, but assure her that this child will definitely give her more joy than she has ever known. God bless you, your sister, and this new life.
    Go to http://www.our-kids.org/Archives/Hea...ial_child.html
  10. by   Finallyat40
    babies with down's who are either born early or have a heart defect (which is fairly common with down's). These kiddos are the most resilient, sweetest babies you can imagine.....I agree with all the posters above....the older kids/adults that I know are just angels on earth. They are gentle, loving, caring, etc. Yes, they may have deficits that will vary with each case, but in my opinion, it's all about attitude. Give your sister a hug and be there for her to lend an ear. Try to locate some down's parents in your area for her to touch base with, maybe through your local children's hospital, pediatrician, maybe even the school nurse.

    Jamie
  11. by   ayndim
    Quote from gthurma
    Hello,
    I am new here and I have lost of questions about downs.
    My sister is 36 and is 5 months pregnant. Her screening test came back positive for downs. Since then she has had her amnio done and she just heard that the baby has downs. Could this be wrong? She is so confused with her feeling on how to deal with the news. She has totally withdrawn herself from everyone and wants to be left alone. Is this normal? I am her older sister but also her best friend. This is so hard on me as well. She said that she wants to hear something positive from someone. What can I tell her that will help her feel better? She said that she feels so selfish because of the way she is feeling. She told me that she didn't think that she could mentally care for this baby but as soon as she thinks that she needs to terminate the pregnancy she feels the baby kick her and then she beats up on herself. I am worried that this is going to make her depressed so bad that she wont be able to snap out of.
    Please any help anything that a could give her to help her.
    G

    While pursuing a special education certification, I had the joy of working with several children who have Down's Syndrome. After the behavior and temper tantrums of many of the other special needs children, the children who had Down's Syndrome were a breath of fresh air. They were sweet and very kind. Their smiles will make your day, as they are so genuine. I can't really explain it but once your niece/nephew is here you will understand how just the presence of a child with Down's Syndrome can brighten the whole room. Had I continued on with teaching I wouild have loved to only work with children who had Down's Syndrome. I remember coming from a practicum in a regular classroom to work with 2 of the children with Down's Syndrome and feeling such a sense of relief. Much nicer than working with any other child, whether special needs or not. They are just a joy to be around. My daughter attends the same school and is friends with one of the girls. Although mentally she is a little behind the others, she has many friends and doesn't seem to have any trouble playing with them. My daughter likes her and treats her like her other friends. They are in 1st grade, btw. The severity of mental retardation can vary widely but early intervention programs can help immensely. They start at birth and continue until age three, when the children transition to the local school district for support services. The earlier the program is begun the better for the child.

    All of that said, children are children and all will have their good and bad days. But in my experience, the bad days aren't any worse than any other child's.

    I wish I had something more to offer you. The early intervention program may let your sister come and meet some of the mom's of children who have down's syndrome or perhaps your sister can find a support group.

    I think it is normal for your sister to feel and behave the way she is. She is grieving for the baby she imagined in her mind. I believe the consesus of psychologists is this is normal. By the time the baby comes she will probably have not only come to terms with it but armed herself with information on Down's Syndrome and what she can do to help her child reach his or her full potential, which is higher than most people realize.
    Last edit by ayndim on Nov 26, '05
  12. by   mercyteapot
    I know this thread was moved here, but I don't know from where. Might I suggest a duplicate post on the DD nursing board? Also, for your sister, she may want to check out http://www.ndss.org/ This will give her some information about the resources that are available to her and her family, and possibly will help her to decide what her next step may be.
  13. by   BabyRN2Be
    Quote from gthurma
    Thank you everyone that has replied.
    I will always stand by her no matter what she chooses. I am happy to say that I spoke with her yesterday she seemed more like herself. We did not bring up the baby at all. It seems that she is going to give it to God to decide what will happen. I am happy with that choice. I will do everything I can to help her in anyway that I can and I will be looking for all the help I can for her and the baby. I was told that if they can not afford the treatment that the baby will need that she could go to her school district and get state help. Is this true? I want to make sure she gets the best help that we can get for her and the baby. If anyone has any suggestion it would be very helpful.
    We live in the Seattle area.
    G
    Yes, this is true. You can get help through your local school district from birth through 21. My cousin unfortunately has two children who need state funded help, and they both get speech and physical therapy at home through the state's early intervention service. She will undoubtedly see a social worker in the hospital, and he or she can get this rolling for you. The sooner the better! If a social worker does not contact you at the hospital, PLEASE request a visit from social work. These people really know their stuff, and they are the very best resource for you!

    I hope that things go well for everyone.
  14. by   mercyteapot
    It varies in each state, but in my state (CA), the school district doesn't kick in until age 3- and they are responsible only for educational services. There is a Regional Center system here, that coordinates state funded services for people with developmental disabilities and their families. They are the lead agency for our Early Intervention system as well- in this state, the criteria for EI is broader than for Regional Center (EI extends from birth- the third birthday), but at any rate, a child with Down Syndrome would become eligible for RC. The Down Syndrome Society link in my previous post will be able to connect your sister to a local chapter, and they'll have the skinny on how things work in her area.

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