[Sgrossmann]

Hi, Yesterday I found out I might be having a T 21 baby. Abortion is of course not an option. I have to older sons (4 & 5 by the time Logan comes). I'm looking for advice on how to be a good mother to a special needs child? Should I start preparing the boy now? Should I not tell them he might need alot more attention? I'm kind of lost and the Dr.s aren't much help. I don't know what to expect at the hospitol. Will they take him to the NICU? Will he need tests? Can I BF him? I'm sorry for all the questions but I feel the need to know as uch as I can to be the best mother I can.

[2girls]

I don't have the anwers you are looking for, sorry.

Will they be doing any further testing to tell you for sure if it's Down's Syndrome? (I thought the only 100% way to tell for sure was an amnio. but I could be very wrong on that)

What types of things did they see that gave the indication, if you don't mind sharing.

I just want to wish you the best of luck. I know you will be a great mom and you will love this little boy no matter what!

[LovingJesusinAZ]

I don't have any answers, either, but you have my prayers

Did you find out from the AFP? Are you going to undergo further testing (like the amnio 2girls asked about)?

[Samual]

We have quite a few children at school with downsyndrome and our local playschool, when until they are around 3 you don't notice anything different developmentally apart from sometimes a slowness in speach. The children with downs I have taught just need more one to one time and take longer to learn things, but when given the time they do great.

[Sgrossmann]

Ok, here's my story:
My blood test came back as a 1 in 10,000 chance. Which is below average. I thought I was ok but I didn't care either way. I'm adopted. Then at my 1st level II, long story, It hurt she pressed so hard and she didn't talk or even really notice I was there. Then they lost it. The second scan they found the Neucle Fold (sp) was a .6 which is a borderline marker for DS. At this last scan the found his kidney was measuring at a 4.2 which is a marker DS. I was offered an amnio but was told unless I wanted to "terminate" the pregnancy it wasn't recommended. With a 1 in 300 chance of him coming at the time of the amnio. All I could think of was yes I would like to know to be prepared but if I'm batting at a 1 in 10,000 and won that lottery then 1 in 300 was very likely. But I just want to be prepared for birth and my hospital stay. I tend to go into labor early so that's another problem before the DS. I know some babies need surgery but I would like to know if they will take him to the NICU or if I can kep him in my room. Will I have to leave him in the hospital when I get sent home? Thanks for the prayers but I would rather have a DS baby b/c I know I can handle it. Some people might decide to "terminate" I would give him the BEST home possible and two big brother to love and protect him. I would love to have a special angle in my home and in our hearts. Thank you for any info or thoughts you might send my way.

[fostermommy]

While I do not have any experience parenting a child with special needs, I've been working with families of special needs children for many years. I might be able to help a little, but not as much as a parent would.
Whether or not your baby would need to go into NICU would really depend on how he transitions at birth. Some T21 babies have heart defects that need repair - in which case he definitely would need the NICU. Otherwise, he may be OK. You should be able to breast feed too, unless cardiac issues cause him to have difficulty - in which case a brief period of pumping may be needed - with the plan to breastfeed later. A lactation nurse may need to help a bit if baby's suck is weak due to low muscle tone. I don't believe that most babies with Down Syndrome need extended hospital stays once it is determined that their heart is OK and they can feed well.
In regards to talking with your sons ---- that's such a personal decision. I certainly would wait until after baby is born - in case you beat the odds. I think that I would just allow the boys time to love and enjoy their new baby without their worrying about special needs. Soon enough, they will ask questions, and that gives you the opportunity to point out the special needs of your son. By then, you would have a better handle on the degree of needs your baby may have, and could more accurately answer their questions and possibly avoid some fear and worry.
When I was in the first trimester of my first pregnancy, I was exposed to CMV (cytomegalovirus). The neonatolgist did a long series of ultrasounds and raised concerns about the likelihood of microcephaly. He presented "termination" as an option, and wanted to do an amnio. I rejected both. He was fine at birth. I don't want to give false hope, but there is always that possibility............
Please feel confident that you can just treat this son the same as you have your other special kids. Most kids with T21 grow up to be happy, healthy, and very loving and caring individuals.
Blessings to you. You are in my prayers.

[punkepooh]

I am not a parent of a child with DS but I was a nanny for one. I spent 4 years with this family from the time the little guy was about 3 months old. I know when he was born no one expected it as all his mom's tests came back normal and she was only 29 when he was born. Like the prior post says the whole NICU thing depends on what is going on and how he does right after birth. The little boy I took care of had no heart defects and was only on oxygen for a few days after birth He was breast feed but did have to have a little more help with his latch. One of the keys with a child with DS is early intervenion. He started receiving physical therapy right around 2 months old and with a lot of work and encouragement reached his milestones on the older end of the "normal average". I could go on and on this family is still a huge part of my life they now have 4 children and the little boy with DS is now 8 years old getting ready to go into 3rd grade, he can read write his name tell time, and take apart and put back together anything electronic! If you want to ask me any questions feel free to send me a PM.

[Tracey with 6]

I had the nuchal translucency test donw with Ellison, I came back with a1 in 1144 chance of her having DS, she had SIngle Umbilical Artery Syndromw, which is a soft marker for it and slow growth, also a soft marker, all up I was told to prepare myself, wellshé 4 onths old today and she is completly normal! NO problems at all! I'd do some reserch like I did there are plenty of websites out there just goodle Down syndrome. but don't stress it, what will be will be, DSisn't as stigmatised as it was when we were kids, you will cope because you love and want this baby! PM me if you want to chat

[mcmama]

Are doctors now telling everyone not to have amnio unless they want to terminate? I had it with both my sons due to my age and some family history issues (or questions) and while it was explained that there was a risk it was minimized then and they were fine. The only thing doctors said would not justify the risk was having the test to see if the baby was a boy or girl.

My boys were fine - most babies are - I would hate to think of you not having this test when you really need it. You don't just need to know in order to abort, you need to know in order to prepare. But you know your own risks and what is worth it and what is not.

I wouldn't abort for Downs Syndrome either. It's a challenge, but it is not the end of the world, and the quality of life is often long and very good. I wonder how much doctors see of mothers who want testing to prepare for raising a child who is not "perfect" as opposed to deciding whether or not to "terminate".

Ask your doctor about what alternatives there are to amnio which can give you more definite information as you go on. Is it possible that this is not downs syndrome, but some other disorder which shows up with similiar indications? will you know more from ultrasounds as the pregnancy progresses?

In my prayers.

[DK615617]

I personally would research amnio, I think the odds of going into labor are less than what the doctor said.
I would personally want to know for sure, so as to be prepared. If it came back that the baby did have DS you would have time to research and be prepared when baby comes. I have heard such wonderful things about physical therapy and speach therapy started super early. Also if there is a problem with the heart the hospital would be aware of possible problems and ready to act. I wouldn't look at amnio as a thing to do to find out only if you are going to "terminate" -I would consider it as a way to prepare...........Why spend hours researching DS if the baby doesn't have it.
My sister in law knows someone who was told that the were having a DS baby, the Nuchal test had come back positive, the blood test for the protiens had vome back positive.......they spent months preparing and ended up with a perfectly healthy baby with no DS!>
I am not trying to give false hope, just know that without definite genetic testing you don't know for sure.
My cousin has DS, and I have taught 2 kids piano that have DS, and I know several other families with children that have it. They are sweet kids. They can be a challange----but what kid isn't !!!!
Good luck to you, I hope things work out for the best for you. It sounds like you are handling the news really well. I will pray for you and your baby---so that you both are happy and healthy (DS or not!)