sister baby was just diagnosed with downs

JRapha'sRN · Nov 24, 2005

The best advice I can give is to just be there for her. Listen or just sit in silence if needed. Your love for her will help her. The best thing I ever heard from a mother of a boy with Downs was an analogy to a broach. She said her son was like a very beautiful and precious broach pinned to her heart. The pain and heaviness was sometimes very hard to bear, but the beauty, uniqueness and joy were also there each day. My prayers will be with both of you and the baby's father as this news effects everyone in different ways.

rn/writer, RN · Nov 24, 2005

Google Down's Syndrome and you will find many wonderful sites. Some offer clinical information, but that might not be what she needs most right now. Other sites tell the personal stories of families and individuals who have risen to the challenge of special needs living. You will find pictures and personal accounts about real people as well as contact information for those who are willing to email, write, or speak on the phone with parents going through that shell-shocked early stage. Most of all, you will find sites that give hope. Down's kids who participate in early enrichment programs can achieve all kinds of successes. What used to be a diagnosis of tragedy and doom is now a survivable condition with kids going to school and getting jobs and living full lives with varying degrees of independence. Not every outcome is happy, but many are.

When your sister is able, she should take a look at what these other families have to say and contact a few if she's up to it. The hardest part of raising a special needs child is thinking you have to go through it alone. She and the baby are lucky to have you there for support.

I wish you and your family the best.

babynurselsa, RN · Nov 24, 2005

We had this amazing family several years ago. When they recieved the dx of downs the researched and networked to know everything they felt they needed to know. They would spend their date nights at Borders reading books. They were able to greet their little man with joy, they had worked through the disappointment of the initial dx.

This is not the end of the world. Think of it as a detour on the road of life. Sometimes we have to veer off of the path we thought we were going down but later we find that if we hadn't we would have missed a treasure along the byways.

She has to grieve the baby that she thought she was going to have that for now is not to be before she can be able to welcome the gift that she has coming.

jaxmom63 · Nov 24, 2005

If I may speak from personal experience. I have a sister with Downs. She is a year older than myself. I am 7 out of 10 children. When we were younger, my mom told us that God only blessed special families with a sister like ours. We grew up believing that to be true. When I was in Elementary school, I thought people who didn't have a sister like mine just weren't special. I still feel that way today. My sister has helped my family to be more compassionate and caring of others. Our children have grown up with this wonderful person as a part of their lives and it has helped them all to be very caring, and accepting of others. I know this is a hard thing to get used to. The internet is a wonderful resource. And try to find families that have faced this themselves. I don't know how well your sister will handle this, but I know that if she opens her heart and mind to all the joy this baby can bring her, she will have a very fulfilled life.

You are in my thoughts and prayers.

Emmy

Super_RN, BSN, RN · Nov 24, 2005

My mom was 40-years-old when she delivered my youngest brother, Sage. Her amniocentesis showed the baby to have Down's syndrome. We were shocked at first, but all accepted it. She knew there was no way she could terminate the pregnancy. Well, Sage is now 5-years-old and does not have Down's syndrome. The doc said it was probably because of mom's age that the levels were elevated. Now forgive me, please, because I am not familiar with all the testing and such that goes on. I am only saying what he told us and our outcome. I am not sure if it is common to have a false-positive diagnosis. My prayers are with you and your family.

:icon_hug: Super

**RosesrReder, BSN, MSN, RN** · Nov 24, 2005

:) my prayers are with her and her baby.

LoriAlabamaRN · Nov 24, 2005

Just a quick note- I used to teach Special Ed, and I never met a parent of a child with Down's who was anything but happy to have their special child. If I were you, I would just provide the support she needs regardless of her decision. If she decides that she cannot go through with the pregnancy, she doesn't need to worry that she's letting her family down. But I hope she chooses to welcome this special little life!

judyblueeyes · Nov 25, 2005

My mom was 40-years-old when she delivered my youngest brother, Sage. Her amniocentesis showed the baby to have Down's syndrome. We were shocked at first, but all accepted it. She knew there was no way she could terminate the pregnancy. Well, Sage is now 5-years-old and does not have Down's syndrome. The doc said it was probably because of mom's age that the levels were elevated. Now forgive me, please, because I am not familiar with all the testing and such that goes on. I am only saying what he told us and our outcome. I am not sure if it is common to have a false-positive diagnosis. My prayers are with you and your family.
:icon_hug: Super

I think you are mistaken. Your mom may have had an abnormal triple screen- and from your description I think that is what you are describing- but an amnio is difinitive.

rnang123 · Nov 25, 2005

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

It's a lot to take in! There's A LOT of information available---books written by parents of Down's, websites, etc. There used to be a t.v. show, Life Goes On, and the main character Corky (Chris Burke) is now an advocate for Down's, and has a book out even. I work with adults with Down's, and I am amazed by their abilities...many get married, etc. Still, it's completely understandable to be frightened and scared, especially with something that may not be so familiar. I wish much luck for your sister! There is a poem out there describing a "trip to Italy" and a "trip to Holland" that was written by a mom with a child with special needs, and really brought things into her perspective. If I can find it online, I will send the link=).

yadda_yadda_yadda, LPN, LVN · Nov 25, 2005

I wanted to pass this article along to you. (see below)

A few years ago, a nurse colleague of mine was expecting twins. At time of delivery, she already knew one baby would be stillborn. The other baby she delivered had Down's Syndrome.

I recalled reading this Dear Abby letter years prior & located it to share with others who were looking for some way to even approach her after she'd given birth. This not only helped people set aside their reservations about congratulating the family on their new daughter, but "Mom" wanted a copy. She said he knew it would help to have the words to fall back on & reassure herself when things didn't go as planned, during the early months of her daughter's life.

I certainly hope this doesn't offend anyone. Hopefully, it will be of some help.

Being both her sister & best friend, simply let your heart guide you:icon_hug:

DOWN SYNDROME FAMILIES CELEBRATE THEIR KIDS' LIVES

DEAR ABBY: Your readers may have seen articles about a university professor who killed her infant daughter and then days later, herself. The professor said that she killed her daughter, who had Down syndrome, because she "didn't want her to suffer."

Far from suffering, people with Down syndrome can live full and meaningful lives. Last month, more than 1,600 parents, professionals, advocates and siblings attended our national convention to celebrate the lives and possibilities of persons with Down syndrome.

People and resources are available in each state to help with concerns related to postpartum depression, other forms of mental illness, and issues related to raising a child with a disability. Please inform your readers with questions related to Down syndrome that the NDSC toll-free hotline is (800) 232-6372; our Web site is http://www.ndsccenter.org. -- DAVID TOLLESON, EXECUTIVE DIRECTOR, NATIONAL DOWN SYNDROME CONGRESS

DEAR DAVID: I have had many requests from readers asking me to reprint a wonderful essay that was penned by Emily Perl Kingsley, the mother of a child with Down syndrome. Because October is National Down Syndrome Awareness Month, I can think of no better time to do it. Her essay is dedicated to the families of all children who cope with disabilities.

WELCOME TO HOLLAND

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It's like this:

When you're going to have a baby, it's like planning a fabulous vacation trip -- to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo's "David." The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes and says, "Welcome to Holland."

"Holland?" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plans. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

SmilingBluEyes · Nov 25, 2005

That is a beautiful article, but, I am sorry, but I must ask that articles not be reprinted in entirety on this site, per Terms Of Service, and copyright laws. Instead, please print a paragraph or two, and then post the source or a link the site (as applicable) to the article for further reading or research.

Thanks for understanding and all my best to the OP and her family.