My baby has a chromosonal defect? She's HERE & HEALTHY! Post 355!!!

[goofy!]

Thanks!

Kudos to your daughter on her achievements!!

Thanks

Now, please tell me how to motivate my little guy to get up off of his backside to be as active and involved as your daughter. LOL

Having one in the house myself, that sounds more like an adolescent male thing rather than anything to do with Down syndrome

 

[bsnyder]

I am one who also had to know. With one child with Down syndrome, I had to know with the other two kids.

I am also one of those people who functions better with the most amount of knowledge at my fingertips. After having CVS with my second child and almost immediate results, the wait for the amnio results for my third child was absolutely agonizing.

I would recommend doing the CVS. No matter what your choice is, you can get on with it. As Robin said, nothing is going to change and either you are relieved or you can start digesting the information. You save yourself lots of worry.

Also, one word of caution. Do NOT read any articles or any websites that have information that is more than 10 years old.

The world of Down syndrome has come so far, so fast in what our kids are capable of and what you can expect, that anything more than 10 years old is completely outdated.

Here are some websites to get you started:

National Down Syndrome Society
National Association for Down syndrome
National Down syndrome Congress
Down syndrome health (by a doctor with a son with Down syndrome

I second that advice, about making sure the information you are reading is very, very current. That's true for Turner's Syndrome as well.

The knowing/not knowing thing is a very individual one. Probably related a lot to personality/temperment. My sister had another baby, after she had her middle child with Turner's. Although statistically, she was considered at high risk for having another child with a chromosonal defect, she opted not to do any testing. I would have chosen totally differently, but I'm a "planner" by nature, and find comfort in having all my bases covered. I know it doesn't really make any difference to the final outcome, it's just the way I deal with things. There is no one way that is right or wrong.

 

[minkydog]

I can only imagine your pain & fear. Peace be with you.

My youngest son has a chromosome disorder which could have been detected by CVS or amnio. If we had been given that information I'm very sure we would have been encouraged to terminate. People with his disorder often don't do well.

However, we *didn't* know. Which turned out to be a good thing, because it meant we never stopped pushing and we never gave up hope. As a result, Christian (13) is a happy, healthy fellow who loves to swing, run, swim, go to school, travel, camp, and eat ice cream. He also happens to be very mentally handicapped. And yes, you do just rise to the challenges. We've never had regrets.

Try not to do too much research--no reason to scare yourself to death until you know what you're dealing with.

 

[KirstenB]

I had an amnio with our 2nd dd, because I was 38, and dh's heritage put us at risk for certain birth defects. The amnio was easy, so if you choose it, I hope it goes just as well for you. I'll pray for you to find peace in the coming weeks.

 

[MELSMICE]

Hugs & prayers for you.

 

[TomLovesBecky]

All I will say is that false positives with prenatal screenings are very common, and many women are unnecessarily worried sick. Until the actual tests are performed, try to relax and not assume the worst. Good luck and may God bless your new baby, no matter what the results!

 

[Dan Murphy]

My prayers and good wishes are with you and your baby, Tracy. 's

 

[Disney Doll]

Please try not to get too wound up before you have all your information. I know...easy for me to say!

Regardless of what "syndrome" (if any) your baby may have, at first he or she is just going to be a baby, pretty much like every other baby. I can remember our friends, after our Patrick was born, and had had several tests and so forth, saying to the doctor "So what do we do now?". The doctor's response "Take your baby home and love him". A wise man....

Patrick has Downs. He is the light of a lot of lives. When he was born, no one had any idea he was going to be DS. Nothing had been detected in utero, so it was a shock. I found the National Down Syndrome Society to have a lot of very helpful information. He was really just a baby for a while, then had a couple of tough years physically...in & out of the hospital a lot, but now he's pretty much like any kid...slower developmentally, but goes to school, mainstreams some classes, special ed for other classes. Most states have a lot of help...there's Birth to Three, which I recommend you avail yourself of immediately if your child does have a problem. And then it goes on. Remember, you are not going to have to deal with everything all at once...your child will grow and do and change just like every other kid.

Meanwhile, a little something that keeps our friends going when they have tough days:


HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.


by Edna Massionilla
December 1981

 

[TLSnell1981]

OMG...Thank you soo much...this poem made me cry...yet feel so strong. Thank you

I'm crying right here with you. I know you are sad and scared. It's amazing the strength we can tap into when it's needed. I won't give you advice. You know in your heart what's best for you.

I have a brother who has downs. He is one of the brightest spots in my life. I've learned so much about unconditional love and forgiveness from my dear baby brother (he's now 39). I could not imagine my life without him.

You are in my prayers.

 

[akhenaten]

praying for you and your family....

 

[Microcell]

There is no way to avoid the worry you feel, we had a tech tell us there was "alot of fluid at the base of DS's skull". We freaked out completely and it turned out to be absolutely nothing. I hope that it is not as severe as you think, but having worked with adults and children that have various disabilities, and their parents, you couldn't love your child more no matter what!

 

[lucyanna girl]

I can only imagine how scared you are right now.

When things are at their worse I always try to remember "God does NOT make a mistake." If this is his will then I am willing to bet it is because he knows you can handle whatever he sends your way.



Penny

 

[raysnkaysmom]

I talked to my mom tonight...what was so hard is...I hadn't even told her I was pregnant yet...so I had to tell her both
Leave it to my mom to always be upfront... she tends to be negative...but I have to hear it all right now... And, although I disagree with her about terminating the pregnancy if something is wrong... I do think I will find out sooner thru CVS as opposed to amnio next month... Like she said..."If you are meant to have this baby, a test with risk now is no different than a test with risk later"...
Her reasons for saying if a major defect is detected to terminate is the fact that what if this child grows in pain, wishing they were never born? Then, I also take away from my other children by placing so much time with a special needs child. Losing a baby now is hard (I have miscarried once before) but she said, if it's a heart defect, and the baby goes thru surgery after surgey only to die later...imagine how much harder it would be...
She made me think of things that I hadn't run across thinking yet. Although I won't terminate, I do 'need' to find out, for me, and to prepare my other children. She doesn't want the other kids to resent me or the baby for taking me 'away'.. but I told her people I've talked to (on here) who talk about their sibling who had downs actually brought joy and unconditional love into their lives. I have, of course, heard the other side... so I know I can't predict anything really...
Just....wow... so much to absorb. My DBF and I are going to try to get in to see the dr I saw today so she can fill him in since he was out of town today (home now) and maybe reconfirm some things for me that I may not recall correctly....

 

[klmall]

Some wonderful advice here. You need time to think and people to listen to you. The answers will come. Prayers and hugs.

 

[DisneyBride'03]

So...I went for that test today, they do between the 11th and 12th week, where they check the thickness of the back of the babies neck through ultrasound along with bloodwork. I just had this done with Sage last year, and everything looked 'perfect'.. and he is
Today, my news wasn't as good.. and I'm scared, devastated, concerned.. mostly scared. The thickness of the neck should be at 20cm... this baby's is almost doubled... she is almost positive there is a chromosonal defect. More than likely, down syndrome, but if its a girl, could be Turner Syndrome.

I wont get the bloodwork back til early next week, but she said she is pretty sure it will come back abnormal with the obviousness of the ultrasound.. Then, I have to make a decision within the next week on amniocentesis, or CVS (never heard of the latter).. so I'm off to look up all the overwhelming info I got today. I've only had this information for about 2 hrs... and it's moments of strength, hysterics, guilt, sadness, and anything else you could imagine already.. My poor DD8 was in the room with us....

Any advice....or just thoughts is much appreciated....

I wasnt going to sign in tonight...until I read this.

THis happened to me.
Had the ultrasound. Thickness not normal...told chromosonal..and if a girl, Turners.
They wanted to do an amnio..I said no, I lost a pregnancy due to an amnio.
They told me I could lose the baby by 20 weeks..if not Downs or Turners.
Had many Ultra sounds...
Look to your left, there she is....she was fine, just has a big neck.

Please, Please...no guilt, sadness is expected, the unknown is scary.

If our doctor recommends the amnio, ask yourself what would you do if the test results indicate something wrong.
My prayers are with you..stay strong, talk things out....
They told me so many things...almost all negative, no hope...I felt it was a test of my faith.

Just wanted to share what happened to me..hope it helps...
I was told everything you were.....and I had a healthy baby
God Bless

 

[juligrl]

Hugs to you and your family. My prayers are with you.

 

[TLSnell1981]

I talked to my mom tonight...what was so hard is...I hadn't even told her I was pregnant yet...so I had to tell her both
Leave it to my mom to always be upfront... she tends to be negative...but I have to hear it all right now... And, although I disagree with her about terminating the pregnancy if something is wrong... I do think I will find out sooner thru CVS as opposed to amnio next month... Like she said..."If you are meant to have this baby, a test with risk now is no different than a test with risk later"...
Her reasons for saying if a major defect is detected to terminate is the fact that what if this child grows in pain, wishing they were never born? Then, I also take away from my other children by placing so much time with a special needs child. Losing a baby now is hard (I have miscarried once before) but she said, if it's a heart defect, and the baby goes thru surgery after surgey only to die later...imagine how much harder it would be...
She made me think of things that I hadn't run across thinking yet. Although I won't terminate, I do 'need' to find out, for me, and to prepare my other children. She doesn't want the other kids to resent me or the baby for taking me 'away'.. but I told her people I've talked to (on here) who talk about their sibling who had downs actually brought joy and unconditional love into their lives. I have, of course, heard the other side... so I know I can't predict anything really...
Just....wow... so much to absorb. My DBF and I are going to try to get in to see the dr I saw today so she can fill him in since he was out of town today (home now) and maybe reconfirm some things for me that I may not recall correctly....

I know this had to be a very difficult conversation. For the record.... I never resented my mother or my brother. I have quite a few friends with downs kids.....none of them have any regrets. I have one friend that feels sorry for families that don't have a downs child. I could write a book on the experiences I've had and those of friends. I'm tempted to start a thread on this subject. I know there are many inspirational stories ....as well as humorous ones.

I have found prayer to be very powerful tool at times like these.

 

[goofy!]

I talked to my mom tonight...what was so hard is...I hadn't even told her I was pregnant yet...so I had to tell her both
Leave it to my mom to always be upfront... she tends to be negative...but I have to hear it all right now... And, although I disagree with her about terminating the pregnancy if something is wrong... I do think I will find out sooner thru CVS as opposed to amnio next month... Like she said..."If you are meant to have this baby, a test with risk now is no different than a test with risk later"...
Her reasons for saying if a major defect is detected to terminate is the fact that what if this child grows in pain, wishing they were never born? Then, I also take away from my other children by placing so much time with a special needs child. Losing a baby now is hard (I have miscarried once before) but she said, if it's a heart defect, and the baby goes thru surgery after surgey only to die later...imagine how much harder it would be...
She made me think of things that I hadn't run across thinking yet. Although I won't terminate, I do 'need' to find out, for me, and to prepare my other children. She doesn't want the other kids to resent me or the baby for taking me 'away'.. but I told her people I've talked to (on here) who talk about their sibling who had downs actually brought joy and unconditional love into their lives. I have, of course, heard the other side... so I know I can't predict anything really...
Just....wow... so much to absorb. My DBF and I are going to try to get in to see the dr I saw today so she can fill him in since he was out of town today (home now) and maybe reconfirm some things for me that I may not recall correctly....

My boys don't resent their sister at all. Well, except for the brother 2 years behind her that always complained she was more popular in HS than he was.

They get to travel to Disney and Universal when she cheers

Seriously, they have a very normal sibling relationship. They love each other one day and can fight like cats and dogs the next. They are protective of each other and can also rat each other out in a heartbeat.

If your tests do come back positive, and that is still a huge IF, and when you are ready, here are some great articles from parents that have dealt with pre-natal diagnosis.

http://www.mhdsa.org/PrenatalResources.htm

We are here for you if you need us

 

[Tink & Goofy]

I don't have any advice, just offering prayers.

 

[djm99]

I hope that everything turns out okay.