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Post by esweeney22 on Mar 2, 2006 19:58:36 GMT -5
I am 34 yrs old, currently pregnant and have received a relative risk of having a child with Down's Syndrome in the 1 in 100 range. (that of a 40 yr old woman) I received a level 2 ultrasound and the results were inconclusive for markers for Down's. I was offered amniocentesis but turned it down because of the risk of complications. I dont know how my family and my boyfriend will feel if my baby is born with Down's. I think in a way, my boyfriend feels that if our baby is born with Down 's, that he couldnt handle the situation. To be prefectly honest I am not too sure how I feel. I have 2 children with medical/neurodevelopmental problems (Autism and Hydrocephalus) and the thought of another child with special needs is really upsetting and scaring me. Is there anyone out there experienced similar circumstances that can offer their own prespective and let me know how things turned out?
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Post by Tammy on Mar 2, 2006 20:34:42 GMT -5
Firstly, Welcome to Uno-Mas, you have certainly come to the right place for advice and information. We are a pretty active lot who just love to talk!!
Congratulations on your pregnancy.
My son with DS is now 5yrs old and has just started full time school in January, and it fully included in a regular class.
When Lewis was diagnosed with DS at 30 weeks Gestation, Both my Hubby and I did not take the news very well. For a long time Hubby would not even talk about it, and really tried to ignore it. Even when Lewis was born, he would not look at him or hold him.
I am pleased to say that now... is an entirely different story. Lewis and his Dad are Best friends and spend so much time together. They just cannot get enough of each other.
It was a long hard road at first, but he made it over the bumps and now it is all history.
Having a child with DS is not as bad as it may seem.
I understand how scared you must be feeling, especially with two other children with special needs.
But also, you have not got a confirmed diagnosis yet, so maybe worrying too much is not necessary.
But being prepared is good.
There are a few other parents on this board that also have other children with their own needs, and I am sure someone will reply soon.
If you have any questions at all feel free to ask. Like I said, we all love to talk, and we all love to help where we can.
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Post by Chris on Mar 2, 2006 21:55:59 GMT -5
We found Sarah had a thicken nuchal fold at my level 2 ultrasound when I was 16 weeks pregnant. We were told that she had a 20% chance of having Down syndrome. I refused an amnio but quickly changed my mind because the stress of not knowing was overwhelming to me. At 18 weeks it was confirmed that she did have Down syndrome. At 20 weeks we found that she also had an AV Canal heart defect.
I shed my tears before she was born and was just relieved by the time she was born. The Ds definitely took a backseat to her heart defect. My husband is the world's greatest daddy. He truly loves our little girl with his entire being. It sounds to me like your boyfriend will have no problems if your child does have Ds (although a 1 in 100 risk seems extremely low to me).
Relax and enjoy your pregnancy. My daughter with Ds is in many ways much easier than my typical daughter. Like I said, it is unlikely that your child even has Ds.
Chris
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Post by momofrussell on Mar 2, 2006 22:36:02 GMT -5
Hi there and Welcome to Unomas!!!! My name is Adrienne.. I have 3 kids... my middle child, my son Russell, has Down Syndrome. I found out when I was pregnant Russell was to have DS. I DID have the amnio just to make sure. Yes, it was a shock but for us, the shock wore off very quickly and we just accepted this was our son. (We have 2 girls too). I can't say my situation at home was the same as yours.. so I don't know what to say.  What helped me is I got books at the library and read and I just knew this is what was to be... I think once the shock wears off, things are easier to see. I can't imagine your shoes.. we all wear a different pair... so to you, it seems you have your plate full.. and the thought of another child might make it harder at home... but another child can also bring ALOT of joy.... DS or not!!! With any child we have, that is what we are faced with.. the wonderfulness and the heartache that might happen... but I will tell you.. I think the JOY FAR OUT WEIGHTS the heartache.. by far!!!!! I think you have started this journey well.. getting info.. talking about your feelings... keep that going... and keep the communcation open with your family and boyfriend. Even if they are having a hard time.. they will follow your lead.  I know it may seem like the HARDEST decision.. and since we've already "been there" it's easier for us to say.. Hey, it's going to be OK!!! Because it will!!! No matter WHAT the outcome.. but you need to get to that place yourself. Sending lots of prayers your way.... and try to enjoy the pregnancy.... although it is not what we thought we were getting when we were pregnant with our son... I wouldn't change it for the world!!! Russell has given us SOO much joy.... so many smiles and happiness to me, his daddy and two sisters... we couldn't picture life without him.. and THAT outweights all the fears I ever had..... A. |
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Post by Jodi on Mar 2, 2006 23:38:25 GMT -5
Ditto what A said!
I too have a different pair of shoes. I found out about Ryan having DS after struggling 16 weeks just trying to hold on to him (complications). I found out through an amnio after a level 2 ultrasound.
You don't know for sure, and until you know for sure, you won't know how to react. I had decided to continue with the pregnancy no matter what the results. When I got the results I cried a lot because the actual news was hard to swallow. I started getting information from local parent groups and sought information just like you are.
Ryan IS a joy and we can't imagine life without him. He is 7, and starts challenger baseball this weekend. He enjoys playing xbox, can read and is learning math pretty well. I won't kid you... life isn't always easy - but when is it with kids?!! I also have a 13 year old son (full blown ADHD with meds) and he and Ryan do the typical annoying things that siblings do to eachother.
The important thing to do is to get the facts and understand what DS is and what it isn't. There are many misconceptions about DS. I found comfort in education.
I wish you well on your journey.
Jodi
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Post by Radonna on Mar 3, 2006 11:41:27 GMT -5
First of all Congratulations on your new baby!
I found out at 16 weeks into my pregnancy that my son Kaden would have Down syndrome. I was young just 19 and didn't really know what having a child with a disability would mean.
I really thought it would be a lot harder than it is. I really just see myself as having a normal average family and Kaden having Down syndrome is just one of those things that make us a little more unique than other families.
Like Jodi said there is a lot of mis information out there that is scary. Alot of it tells that things that CAN occur with Down syndrome. When all those things can occur without Down syndrome. Children with Down syndrome get their basic genetic make up from their Mom and Dad they are unique and the situations vary greatly from one child to the next the way that any children not related to each other would have different medical historys.
There are certain things that are more common in Down syndrome than in the general population but most of those are fixable. The level 2 scan can detect most heart abnormalities, which is one of the biggest worry with babies that have Down syndrome.
We have a large range of knowledge here at Uno Mas. If you need information about anything one of us will have it.
Best of luck with the rest of your pregnancy be sure to keep us updated!
Radonna
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Post by tworiveras on Mar 3, 2006 12:22:36 GMT -5
Congratulations on your pregnancy!
When my AFP screen came back positive for DS, I was scared. I did not have positive past experiences with people with any kind of mental disabilities. I asked my husband how he dealt with people with disabilities and he tenatively said, "not very well". I think he was relieved that I felt the same way at the time. So, we started out on even ground. When my amnio also came back that he would have DS I cried a lot that day. That is the only day I allowed myself to really cry. I still get sad from time to time, but I think we all do.
I also have a 13 year old daughter with pretty severe ADHD. I know it's not in the same ball park as your chidren's diagnoses, but it's tough to deal with on a daily basis. To be honest, I actually have more issues and stress dealing with her than my son with DS.
By the way, my last baby, born when I was 34 had a risk of about 1 in 36 chance of having DS, and she's perfectly fine, so try not to worry too much. I am 35 now, pregnant, and due in September after I turn 36. I do have concerns about the possibility of having another one with DS, but even knowing the risks, we are happy to be having another baby.
Good luck with everything. I hope everything goes well.
Karen
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Post by Kristen on Mar 3, 2006 12:38:40 GMT -5
Hi! I did not know prenatally and my son was my first child, but I wanted to say welcome and try to say please don't worry (HA!). We all went through the initial days after the diagnosis and I think the majority here (myself definately included) have found that life with DS is not what we thought it would be. The baby's health is #1 priority, but after that, over time things really do fall into place. Good luck - hope everything goes wel for you!
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Post by Emilysmom on Mar 3, 2006 20:17:20 GMT -5
Ellen~
My daughter was born nearly 15 years ago, and a few of the prenatal tests that are used now were not being done then. We learned 3 weeks before Emily was born that she had Ds, because an ultrasound showed an intestinal problem that the doc said only happens in babies with Down syndrome. So, off we went for a test called a PUBS (they drew her blood from the umbilical cord and tested it). I don't think that particular test is being done now. We learned 48 hrs later that she had Down syndrome. I have thought so many times that the very WORST time for us were those days before the diagnosis, and the weeks when we knew she had Down syndrome but she wasn't here yet. The fear of the unknown for us was so much worse than "real life" with her!!! As someone else said, it has turned out to be much easier than I thought.
We frequently have expectant parents posting here, who have been told their baby might have Down syndrome. And SO many times, they come back a little later with the news that the tests proved their baby really did NOT have it. We are here for you either way. We'll support you and help you learn more about Down syndrome whether your baby has it or not.
If the results show Down syndrome, we can recommend books that are informative and positive. Please let us know if we can help!!
Susan
(Mom to Emily, age 14)
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Post by kokie on Mar 4, 2006 0:54:35 GMT -5
Congrats on the pregnancy!! There is nothing to be scared of with a Down Syndrome child. They are SOOOOOO much joy and a blast to have. They bring so much love to the family. I have a 13 month old brother with DS and the only thing he has been since the very beginning is IMMENSE JOY!!! You can see more info about DS at our site www.geocities.com/dsinfo05/home.html . If he does have DS, certainly read all you can about it!! Qadoshyah |
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Post by caz on Mar 12, 2006 16:42:44 GMT -5
Hi I was 34 when I had Joshua he is downs and blind in one eye,I was told I had a 1 in 100 chance of a downs baby,I was offered an amino but refused due risk of miscarriage,It made no difference to us that we may have a ds baby,we wanted a baby.I was extremely ill throughout my pregancy at 30 weeks I was rushed in for a emergency ceserean,Joshuas heart stopped,he was very ill and we were told not to expect him to survive,he did thank goodness.For his first year he was ill in and out of hospital.It was very hard time.If you want to ask anything please do x
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What helped me is I got books at the library and read and I just knew this is what was to be... I think once the shock wears off, things are easier to see.
I know it may seem like the HARDEST decision.. and since we've already "been there" it's easier for us to say.. Hey, it's going to be OK!!! Because it will!!! No matter WHAT the outcome.. but you need to get to that place yourself. 
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