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Old 11-18-2008, 12:41 PM   #1
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Pregnant and just diagnosed with DS

I am pregnant with my third child and on friday we recieved the news our baby has DS. He has an omphalacee of the intestine into his umbilical cord so they did the amnio and we do not have full results back, just the 2 day results so far. I am lost and devastated at the news and I have been trying to inform myself with as much information as possible on the condition and how far our lives are going to take a turn. It of course was not what we are expecting but I would love to hear from other mother's out there that have been through this and how you got through the emotions and moved onto loving and being excited again about your baby.
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Old 11-19-2008, 06:36 AM   #2
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Smile Re: Pregnant and just diagnosed with DS

Hello. Just wanted to send you a note to let you know that I have been there. I found out that my daughter needed to have intestinal surgery when I was 37 weeks pregnant and was then told that there was a 25% chance she may have downs. She came a few days later and was flown to Hopkins the day she was born. The news that she had downs seemed unbearable at the time, but addressing her health concerns were our top priority. She spent the 1st month of her life in the NIC U at Hopkins where she got the most wonderful care. When she finally started feeding on her own, we took her home and began this new journey in life. At first all I could think of was why me?? But after a while i began to think why not me?? I can provide this baby with a wonderful life. Although things were scary and overwhelming at first, I can truly say she has brought nothing but joy and happiness into our lives. She just turned 2 last week and is doing exceptionally well. She brings a smile to the face of every person she meets and her personality lights up a room. Being involved in therapy programs has helped her developmentally and we have the highest hopes for her. Meeting other families who are in the same situation is also helpful. It is good to have someone to talk to. Things may seem overwhelming at first, but life will go on as usual. You and your family will fall in love with his baby, enjoy every moment.

 
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Old 11-19-2008, 11:37 AM   #3
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Talking Re: Pregnant and just diagnosed with DS

my heart goes out to you and your family, i know it will be a struggle in the start but as life goes its just another gift

 
Old 12-01-2008, 07:36 PM   #4
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Re: Pregnant and just diagnosed with DS

Thank you for the above encouraging words. I just received the news today that our amnio tested positive for trisome 21 (DS). At first I was flooded with an overwhelming feeling of shock...This isn't happening to us (Denial). Then, I thought about the reasons we had the amnio in the first place and it was indeed to be educated if we should have a baby w/downs. I guess I was somewhat prepared for this news. Now our goal to gather information about our situation so that we can be prepared to be the best parents we can be. I am very upset and still cry (a rollercoaster all day)! My husband and I are sitting hear talking about the two wonderful boys we have and how the birth of our baby girl in March will bring us the biggest challenge and the most happiness. I've already spoken with my dr's and a psychologist to get to this point today. Does anyone have advice for questions to ask our pediatrician or books to read?...We are going to do the usual research on the internet and off to barnes and noble tomorrow. Still in shock, but finding clarity...I think, I hope. Laura37

 
Old 12-02-2008, 08:41 AM   #5
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Re: Pregnant and just diagnosed with DS

I admire your courage to find out for sure and prepare yourself. I wish I had had more time to do so myself. One book that I found to be helpful was Babies with Down Syndrome. It helped me know what to expect the first few years. We also have an Infants and Toddlers (ages 0-3) program through the board of education that was very helpful with answering questions and setting up therapy programs. And one thing that has helped me through this process, is to take things one day at a time. Don't overwhelm yourself with thinking about 10 or 20 years from now. Enjoy the precious moments only a baby can bring. And cherish watching your little baby grow. Hope this helps!

 
Old 12-02-2008, 12:33 PM   #6
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ashmegmom HB User
Re: Pregnant and just diagnosed with DS

I have a 12 year old daughter with Down Syndrome and did not know ahead of time. I happen to be lucky to have a nephew also with Down Syndrome so I had already fallen in love with him and knew what a great guy he was when my daughter was born. I think the advice given above about says it all. Babies with Down Syndrome was a book on my coffee table all the time. The one thing I would also say is get the therapy but don't let it be the main focus of your life. Take time to do the things your family enjoys just like you do now. We took our daughter everywhere with us from the beginning. We always joke when we go out she knows more people than we do. Also do find those families that know what you are dealing with so you can talk with them and they will understand. I thank God every day for my daughter. She has taught me to enjoy every small thing that goes on in our lives. Her belly laugh when she throws a snowball at her Dad is impossible to resist. Congratulations and enjoy your baby girl.

 
Old 12-15-2008, 07:18 PM   #7
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Re: Pregnant and just diagnosed with DS

Quote:
Originally Posted by laura37 View Post
Thank you for the above encouraging words. I just received the news today that our amnio tested positive for trisome 21 (DS). At first I was flooded with an overwhelming feeling of shock...This isn't happening to us (Denial). Then, I thought about the reasons we had the amnio in the first place and it was indeed to be educated if we should have a baby w/downs. I guess I was somewhat prepared for this news. Now our goal to gather information about our situation so that we can be prepared to be the best parents we can be. I am very upset and still cry (a rollercoaster all day)! My husband and I are sitting hear talking about the two wonderful boys we have and how the birth of our baby girl in March will bring us the biggest challenge and the most happiness. I've already spoken with my dr's and a psychologist to get to this point today. Does anyone have advice for questions to ask our pediatrician or books to read?...We are going to do the usual research on the internet and off to barnes and noble tomorrow. Still in shock, but finding clarity...I think, I hope. Laura37

 
Old 12-15-2008, 07:25 PM   #8
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valene604 HB User
Smile Re: Pregnant and just diagnosed with DS

Quote:
Originally Posted by laura37 View Post
Thank you for the above encouraging words. I just received the news today that our amnio tested positive for trisome 21 (DS). At first I was flooded with an overwhelming feeling of shock...This isn't happening to us (Denial). Then, I thought about the reasons we had the amnio in the first place and it was indeed to be educated if we should have a baby w/downs. I guess I was somewhat prepared for this news. Now our goal to gather information about our situation so that we can be prepared to be the best parents we can be. I am very upset and still cry (a rollercoaster all day)! My husband and I are sitting hear talking about the two wonderful boys we have and how the birth of our baby girl in March will bring us the biggest challenge and the most happiness. I've already spoken with my dr's and a psychologist to get to this point today. Does anyone have advice for questions to ask our pediatrician or books to read?...We are going to do the usual research on the internet and off to barnes and noble tomorrow. Still in shock, but finding clarity...I think, I hope. Laura37

 
Old 12-17-2008, 04:38 PM   #9
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tessaandsimon HB User
Re: Pregnant and just diagnosed with DS

Hiya

I'm very new to this board and also quite new to Down's Syndrome. My son is 5 months old and we had no idea until he was 10 days old that he even had any of the traits. The shock was huge, and I think that if I had known before he arrived I could have been better prepared. Do read lots, but also take time to enjoy the fact that you have a new baby. The best thing I read was that...your baby will do everything just like any other baby, but in their own time! Like someone else said, it just makes every milestone even more special. I don't know how old your other children are, but there are some really sweet books out there for siblings to help them to understand and be prepared to explain to their friends. I did an Amazon search. I enjoyed a book called "Gifts" - it is short personal accounts from families on their reactions to and dealings with Down's babies. The authors are very honest about their emotions which made me realise I wasn't alone in feeling how I did. Also, search the internet for the poem, "Welcome to Holland" - it continues to give us strength.
If there is one thing I can tell you for sure, there is not a thing that I would change about our son, least of all his Down's.
Good luck and I look forward to hearing about your impending arrival.

 
Old 12-19-2008, 02:24 PM   #10
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Re: Pregnant and just diagnosed with DS

One of the best things you can do is get in touch with a program called the Birth 2 Three. They are a wonderful group that will be there for you from the time the little one comes to the time she is 3. They offer family support plus all the therapist you will need. They can give you every piece of info you will need.
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Old 12-29-2008, 06:59 AM   #11
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Re: Pregnant and just diagnosed with DS

I know the shock and apprehension you must be going through, but try to focus on the big picture. Your life won't change all that much, and they are very sweet, lovable children.

I was 23 when my son was born with DS, I was completely shocked. I just brought him home and went on as with any other child. There wasn't any difference in day to day life except when the bus came in the morning he went to a different school as the other kids. Big deal

I had a couple rough years with behavior problems, he hated going to school, but now that he's older that's behind us.

A couple stories:

One day we were sitting on the back porch as a storm was approaching, and we could hear the thunder getting closer and the sky was darkening, and all of a sudden he said "Uh oh" And I asked what was wrong. He said "Bee-ba, danger, putt putt" He was worried about his grandmother (bee-ba) being on the golf course (putt putt) during a thunderstorm!! He was 13 and had been evaluated with a mental age of 2 years 3 months, that doesn't sound like something a two year old would be thinking about, does it. Just because the communication isn't there, doesn't mean they aren't smart.

Another time I was out in the yard arguing with a drunken neighbor about her dog barking, she gave me the finger and her husband came out, turned around, bent over, and said kiss my a**. My son came over and took my hand and led me away from the fence without a word. He has more class in the tip of his little finger than both those "normal" people have put together. I'm extremely proud of him and hope he taught them something.

The day to day stuff isn't really all that different, we all live life one day at a time, right? Once the shock wears off, you will do fine.

My son is 35 now, and I'm so glad he's mine!

 
Old 12-29-2008, 08:35 PM   #12
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mehoo HB User
Re: Pregnant and just diagnosed with DS

Hi,

I'm new to this board. I have an 8-year-old with DS. She goes to a regular school in a regular class. She's learning to read and write. Life isn't much different, except that whenever she achieves something I'm ten times prouder.

 
Old 01-05-2009, 02:39 PM   #13
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Screaming HB User
Re: Pregnant and just diagnosed with DS

god i know exactly what you are going through we are in the same place and iam so scared we did not do the aminocentis because we didnt like the risk
i have been reading this book that may help you alot its called Gifts edited by Kathryn Lynard Soper it is kinda like all those chicken soup books alot of letters and stories collected about their ds children
its given me a bit of hope that these children we are having can have a great quality of life because we are their parents
thanks, Lea

 
Old 01-05-2009, 02:44 PM   #14
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Re: Pregnant and just diagnosed with DS

WOW THANKS iam 24 with a pregnancy that scares me to death i want to know now if my child is ds but we felt that either way we will raise this child the best we can and the aminocentis is to risky
no matter what i hope our child has as much heart and class as yours
iam begining to learn that this isnt the end of the world

 
Old 01-31-2009, 09:21 AM   #15
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Re: Pregnant and just diagnosed with DS

Just wanted to let you know to just hang in there. I had an aminocentisis also when I was pregnant because of my age. The doctor told us also that our daughter had down syndrome. That was 12 years ago. Like you I didn't know what to expect and the clinic didn't make it any easier because they kept calling me asking me "what did I want to do". That was more stressful to me than learning she had down syndrome. Well I felt that God gave her to us and he knew what he was doing and he was going to keep and guide us in raising her. Well I want to tell you that you will be amazed and feel proud and blessed as your child grows. Of course they may not be as fast as other kids in learning things but as they learn you will be so proud. When my boys were born, a lot of things went unnoticed because we didn't "stop to smell the roses". Well as your child grows you will notice every little achievement and it is like you are having a party cause all those things I didn't notice as my boys were growing I noticed with my daughter. Just have patience and be there teaching even if it takes multiple times to teach but you will feel like you had a great part in his or her success. The thing that goes through my mind is that if God brought you to this, he will bring you through it and you will be stronger than you ever thought you could be. My daughter also later was diagnosised with autism and she has a hearing impairment where she is still not talking but she knows how to get her point across. There are a lot of stressful moments with that but I love her and wouldn't give her up for anything. I have learned to take things people say with a grain of salt and know for yourself that your child is a blessing and God just thought you were just that special to take care of one of his own. Be Blessed and keep your head up.

Last edited by blessedmom; 01-31-2009 at 09:26 AM. Reason: left out words

 
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