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

I'm very unfamiliar with carrying for down syndrome.

My pregnancy was uneventful. He was our first child, so maybe I didn't know any different, but I remember enjoying my pregnancy and being thrilled that I was able to have 6 ultrasounds and could watch my little guy grow up. I did develop gestational diabetes, but that was from a hereditary standpoint and not because I was carrying a child with Down syndrome. I managed the diabetes through a strict diet. His delivery was uneventful, other than the fact he simply refused to come out on his own. We nicknamed him Tigger because he was constantly bouncing around in there.
 
:hug: Just wanted to give you a gigantic hug. :hug: I'll be praying for you and the baby.

Shelby
 
The emotions you are feeling are perfectly normal. I remember having similar feelings when we were told after our ultrasound that our child may have a chromosonal defect. We had to let that absorb over the next few days and since we refused testing, we waited until our son was born to find out he was diagnosed with Down syndrome.

I just wanted to share that if...and I stress if...your testing comes back positive, it will truly be ok. There are many people who will support you, love you, love your child, and be there for you when you need them.

Please know that if you need information or direction on where to obtain information, I have a number of websites and organizations that I can send your way. Please don't hesitate to PM me if you have specific questions or if I can walk you through this in any way.

This is a picture of my little guy...who is really not so little any more.
BikeRiding005.jpg

He's a cutie! :thumbsup2

Thank you all... My friends daughter (just born in July) was a 1 in 25 chance of developing Trisomy 18.,....but she is perfectly healthy :)
My dr told me Trisomy 18 was unlikely, but she was 'pretty sure' that my baby had a genetic defect just by the extensive thickness of the back of the neck :(

I'm looking at my CVS and Amnio options... I really don't want either.. but if I do CVS, I'd have to do it within the week... I don't think I will. If I change my mind and feel I 'need' to know whats exactly wrong, I'll go with the amnio at 16 weeks.. I've just always thought those tests were bad because they increase risk, and can't solve a defect anyways... Now..I'm confused and scared about what I 'should' do....

As I read about Turners..if I was able to carry the baby to term, Turners seems totally manageable.. but my drs concern was carrying to term. I'm very unfamiliar with carrying for down syndrome. Doesn't mean I wouldn't do it.. but I'm in totally unfamiliar territory being blessed with 3 healthy children....

Again, wait for a definate answer. :hug:

You know, looking back, I never would have considered myself capable of raising a "disabled" child (I hate that term btw.). But I wouldn't trade my son for anything. Yes, some days are harder than others, but you just love them - unconditionally. I'm going to post a poem that may or may not help - it helped me, and I still read it when I go through a difficult stretch....
The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social
pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for
propagation with great care and deliberation. As He observes, He instructs
His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to
profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped
child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who
does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of
self-pity and despair. Once the shock and resentment wears off, she'll
handle it."

"I watched her today. She has that feeling of self and independence that
is so rare and so necessary in a mother. You see, the child I'm going to
give her has her own world. She has to make her live in her world and
that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter,
I can fix that. This one is perfect - she has just enough selfishness." The
angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally,
she'll never survive. Yes, here is a woman whom I will bless with a child
less than perfect. She doesn't realize it yet, but she is to be envied.
She will never take for granted a 'spoken word'". She will consider a
step" ordinary. When her child says 'Momma' for the first time, she will
be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty,
prejudice....and allow her to rise above them. She will never be alone.
I will be at her side every minute of every day of her life, because she
is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in
mid-air.

God smiles, "A mirror will suffice."

:hug: You will be in my prayers.
 

Thank you all... My friends daughter (just born in July) was a 1 in 25 chance of developing Trisomy 18.,....but she is perfectly healthy :)
My dr told me Trisomy 18 was unlikely, but she was 'pretty sure' that my baby had a genetic defect just by the extensive thickness of the back of the neck :(

I'm looking at my CVS and Amnio options... I really don't want either.. but if I do CVS, I'd have to do it within the week... I don't think I will. If I change my mind and feel I 'need' to know whats exactly wrong, I'll go with the amnio at 16 weeks.. I've just always thought those tests were bad because they increase risk, and can't solve a defect anyways... Now..I'm confused and scared about what I 'should' do....

As I read about Turners..if I was able to carry the baby to term, Turners seems totally manageable.. but my drs concern was carrying to term. I'm very unfamiliar with carrying for down syndrome. Doesn't mean I wouldn't do it.. but I'm in totally unfamiliar territory being blessed with 3 healthy children....

You should do what you feel comfortable with. Many women refuse testing. Others want to know exactly what they're dealing with. You may feel better if you know what exactly is going on in there, or you may worry more about miscarrying after an amnio or CVS.

You don't need to decide this minute. You might want to just clear your head a little, take your time to make your decision.
 
Thank you all... My friends daughter (just born in July) was a 1 in 25 chance of developing Trisomy 18.,....but she is perfectly healthy :)
My dr told me Trisomy 18 was unlikely, but she was 'pretty sure' that my baby had a genetic defect just by the extensive thickness of the back of the neck :(

I'm looking at my CVS and Amnio options... I really don't want either.. but if I do CVS, I'd have to do it within the week... I don't think I will. If I change my mind and feel I 'need' to know whats exactly wrong, I'll go with the amnio at 16 weeks.. I've just always thought those tests were bad because they increase risk, and can't solve a defect anyways... Now..I'm confused and scared about what I 'should' do....

As I read about Turners..if I was able to carry the baby to term, Turners seems totally manageable.. but my drs concern was carrying to term. I'm very unfamiliar with carrying for down syndrome. Doesn't mean I wouldn't do it.. but I'm in totally unfamiliar territory being blessed with 3 healthy children....

Pregnancies of a child with Trisomy 21 are usually no different, with very little extra inherent risk than a pregnancy with a child with only two 21st chromosomes. Unless you have risk factors that would happen no matter what the test results, you should not be worrying too much about carrying the baby to term.

I have 3 children. My daughter is my oldest. Her pregnancy was the easiest. My 2 sons after that were full of bed rest and terbutalin.

Here is my daughter receiving a college scholarship from the Denver Broncos for her academics, her athletics and her volunteerism.

12242kacey.JPG


and this picture is in my siggie, but here is her team winning the 2008 UCA National Allstar Cheer Championships in WDW this past March. Kacey is the farthest right base (the one on the right looking at the picture of the farthest right group holding up another cheerleader):

12242uca_championship_photo_-_resized_-_jessies_butt_cropped_out1.jpg
 
The emotions you are feeling are perfectly normal. I remember having similar feelings when we were told after our ultrasound that our child may have a chromosonal defect. We had to let that absorb over the next few days and since we refused testing, we waited until our son was born to find out he was diagnosed with Down syndrome.

I just wanted to share that if...and I stress if...your testing comes back positive, it will truly be ok. There are many people who will support you, love you, love your child, and be there for you when you need them.

Please know that if you need information or direction on where to obtain information, I have a number of websites and organizations that I can send your way. Please don't hesitate to PM me if you have specific questions or if I can walk you through this in any way.

This is a picture of my little guy...who is really not so little any more.
BikeRiding005.jpg

Great looking kid!
 
/
I had the EXACT same thing happen to me with my first dd (I was 21 years old). I did the CVS 3 days after my first ultrasound then had the terrible 10 days of waiting... She did NOT have any chromosome problems but did/does have a heart defect which is why I'm telling you this.. they are now finding out this is also an indicator of Congenital Heart Defects. She had open heart surgery at 6 months and is as normal as a 7 yr old could be (if there is such a thing as normal in a 7 yr old)

The CVS wasn't bad at all. I'd do it again if need be. I had mine done thru the abdomen, not cervix like some ladies. Took maybe 15min total, I had some light cramping but that was it. I would really think about it. Even if it wont change your mind about having the baby it will give you time to prepare for his/her arrival. Also you'll get to find out the sex of the baby a whole lot sooner than other people. :flower3: I will keep you in my prayers.
 
I think with what you're dealing with, (these 'defects' that aren't life threatening) a lot of women decide to just forego the amnio (I would..later ultrasounds would tell you if it's downs for sure) if they plan on carrying to term. These are just the women I know..but there are others who NEED to know exactly what's going on. Depends on what type of person you are.

I'll keep you in my thoughts and prayers. I have a downs sister in law, and my brother is mentally handicapped. They're both amazing and I'm blessed to know them. :)
 
I know exactly how you feel 'cause I've been in that exact situation. With my first daughter, they told us there was a very good chance she would be born with Down Syndrome. We went to the regional hospital and saw a geneticist. I didn't eat or sleep much for the next weeks while we waited for the more advanced tests -- it was the worst thing I could possibly have done. It's easy to say, "Don't worry about it 'til you know for sure," but I don't know how that's possible. Just do the best you can. In the end, everything was fine for my daughter. I pray you'll have the same good results.
 
:hug: Prayers for you.

I work with children with special needs daily as an assistant special education coordinator. There is one student I pick up on my way to the office every day to take to school. He has Down Syndrome. There are days I would just call in and not go in if it wasn't for getting to see that kid.
 
Great looking kid!

Thanks!

Kudos to your daughter on her achievements!!

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
 
My pregnancy was uneventful. He was our first child, so maybe I didn't know any different, but I remember enjoying my pregnancy and being thrilled that I was able to have 6 ultrasounds and could watch my little guy grow up. I did develop gestational diabetes, but that was from a hereditary standpoint and not because I was carrying a child with Down syndrome. I managed the diabetes through a strict diet. His delivery was uneventful, other than the fact he simply refused to come out on his own. We nicknamed him Tigger because he was constantly bouncing around in there.

Ohh..I meant 'caring for'...not carrying :)
But...just like with any child...I'm sure you figure it out :)
 
I'm so sorry. I hope everything turns out good.

I had an amnio my last 2 pregnancies. I was 35 with one and 37 with the next. I'm just the kind of person who needs time to prepare. Many times people say they are going to abort so why have it. Well for me I needed time to absorb it all so I would be ready to deal with any problems once the baby was born. Luckily my boys were born without any health issues.

I just wanted to say that because you need to do whatever is going to help you deal with the situation the best. If you need to know ahead of time don't let anyone make you feel bad for wanting the testing and OTOH if you want to wait, do other testing or just see what happens when they baby is born then do that if that works best for you.

I hoping for the very best for you, your baby and your family :hug:
 
I had the EXACT same thing happen to me with my first dd (I was 21 years old). I did the CVS 3 days after my first ultrasound then had the terrible 10 days of waiting... She did NOT have any chromosome problems but did/does have a heart defect which is why I'm telling you this.. they are now finding out this is also an indicator of Congenital Heart Defects. She had open heart surgery at 6 months and is as normal as a 7 yr old could be (if there is such a thing as normal in a 7 yr old)

The CVS wasn't bad at all. I'd do it again if need be. I had mine done thru the abdomen, not cervix like some ladies. Took maybe 15min total, I had some light cramping but that was it. I would really think about it. Even if it wont change your mind about having the baby it will give you time to prepare for his/her arrival. Also you'll get to find out the sex of the baby a whole lot sooner than other people. :flower3: I will keep you in my prayers.

They did discuss the possibility of the heart defect to me as well..although she said it'd be hard to tell the exact defect.... I guess I'm most worried, because I could see the thickness of the neck...... I dunno....


And...This poem

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social
pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for
propagation with great care and deliberation. As He observes, He instructs
His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to
profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped
child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who
does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of
self-pity and despair. Once the shock and resentment wears off, she'll
handle it."

"I watched her today. She has that feeling of self and independence that
is so rare and so necessary in a mother. You see, the child I'm going to
give her has her own world. She has to make her live in her world and
that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter,
I can fix that. This one is perfect - she has just enough selfishness." The
angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally,
she'll never survive. Yes, here is a woman whom I will bless with a child
less than perfect. She doesn't realize it yet, but she is to be envied.
She will never take for granted a 'spoken word'". She will consider a
step" ordinary. When her child says 'Momma' for the first time, she will
be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty,
prejudice....and allow her to rise above them. She will never be alone.
I will be at her side every minute of every day of her life, because she
is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in
mid-air.

God smiles, "A mirror will suffice."



OMG...Thank you soo much...this poem made me cry...yet feel so strong. Thank you
 
Oh I could see the thickness of the neck as well.. I'll keep you in my thoughts.
 
I don't have any advice but I hope all turns out well :hug:
 
:grouphug:

Know that many hearts and prayers are with your sweet baby, you and all your family. :hug:
Please try to take it one day at a time and always keep the faith ^i^
 

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