If you knew you were having a special needs child would you have it?

[prayerful wife]

This may be kind of long, but I'd really like to get you guy’s opinions:

My cousin has a 9yr old son with autisium and he's high functioning, he just has severe behavioral problems.  Her daughter is 2 1/2 and wasn’t born with the same problem.  She's currently 13wks and just had an amino which confirms that this child will probably have autisium as well.  She's having a hard time deciding what she wants to do.  The dr asked her if she wanted to terminate.  I was thinking "NO" was going to come flying out but it didn’t.  She confided in me that she's tired and truly has her hands full with her son which I can testify to.  They let her know that this child may be worse off then the 1st.  I can’t tell her what I would do b/c I don’t want to guilt her into doing something she doesn’t want to do.  Her husband is in the air force and is currently over seas.  His tour just started so it's likely he won’t even be back for the birth.  

It's easy for me to say "oh I would welcome this baby with all the challenges", but at the same time I don’t have a child that already requires my every breath!  Honestly ladies, what would you do?  How would you cope?  She wants to make a decision before she reaches 16wks and I honestly can’t tell her what to do b/c I don’t know myself.  HELP!

[Atia_Julii]

I think this is a very personal decision, and a decision that no one else can judge.  I also think it's a decision that no one could ever understand, unless it was themselves in the situation.

I have a cousin who is severely mentally handicapped.  (I believe he has an extra chromosome, but is not Down's)  Luckily for him, my aunt and uncle who are his parents are very wealthy, so they are able to put him in special schools, and have their house handicap accessible, etc. . .  But I wonder, what if this child is born to parents who don't have the money to take care of a child with such special needs?  

My husband and I are TTC, and we've had this conversation before, and never really come to a real conclusion.  I will say this though. . . and please don't think I'm being dishonest or anything, but if I did decide to terminate the pregnancy, this would be a secret between my husband and I.  As far as anyone else is concerned, they could just think we m/c.

[kris777]

Wow--that is a tough situation!  I just did some online research though and did not come up with anything that shows you can actually test for autism in the womb.  There was some research and testing I found done on the placenta after the baby is born.  I did find that they have a "theory" right now that higher levels of testosterone in the amniotic fluid could point to autism, but it's not completely reliable.  I just don't see how they could tell her with 100% certainty that this baby would have it.  I don't know--I wish there were a clear answer.  I have a son that was born with a heart defect and has undergone two open-heart surgeries and he is 2 years old.  I know what that fear feels like when you're pregnant again and hoping this baby is normal.  I also couldn't imagine raising two children with autism--it would be the most difficult thing in the world:(  Soo sorry, but I would check into it more and have her do the same because in my opinion from what I have found, they can't tell her that for sure.  Good luck!  Here are a few sites:
http://www.telegraph.co.uk/earth/main.jhtml?xml=/earth/2007/09/11/sciaut111.xml
http://www.abc.net.au/science/news/stories/2007/2030667.htm
http://abcnews.go.com/Health/story?id=2123932

[prayerful wife]

Oh I don’t blame you!  I'm 24wks now and know what a blessing it is, but if it were me (especially after witnessing what she already goes thru) I don’t think I could do it.  That little boy is a hand full and she feels so guilty about his condition that she doesn’t discipline him the way she should.  Just b/c he has autism he truly knows what he should & shouldn’t do, and she lets him get away with murder.  When I have him at my house I give him that same look I give my boys and he straightens right up.

That's just a hard one, and I pray she makes the right decision for her.  We're a tight knit family and we'll help her as much as possible, but at the end of the day when she's at her own house that child will be hers and hers alone!

[LosingMyMindInGA]

Personally, unless there was a 0% chance of my child surviving I couldn't terminate and even then I would hesitate becuase doctors can be wrong.  I'm more of a person to let nature run it's course and let things happen they way they will.  God is giving her these special needs children for a reason.  I don't believe that reason is to terminate one of them.  How does she know that this child she's carrying now may not be the ONE person who somehow helps find a cure or better treatment for autism??

Just becuase the doctors SAY this child is at risk and may be worse does not mean this child WILL BE.   Mistakes happen and she could terminate a perfectly healthy, normal child.  

MY decision would be NO I would NOT terminate under those circumstances.

[SweetKandyGirl]

Wow!  My DH and I have also talked about this, and also about Down's Syndrome. I've asked him how he would feel if they told us that our child would have one of these, he said he wouldn't know how he felt until he was put into that situation. Hopefully we wont be, but I think I have to agree with Atia_Julii, either that or I would put him/her up for adoption. We are by no means wealthy, right now we are living paycheck to paycheck. I would perfer to give him/her up for adoption to people who have the money to help them and send them to the best schools and give them the best medical care available.  My prayers are with her.

[Brown Eyed Gurl]

Yes definatly....my Dh and I always said maybe the reason we had those MC's are because maybe those babies had something wrong with them and God didn't want us to have to deal with that......or maybe they were perfect and God wanted us to have a special needs child but no matter the reason we will take what ever God gives us even if it might be a little more work on our part.

[rachie204]

I have a perfectly healthy almost 4 year old son so even though he requires very much attention it is very different then someone with autism.  I am not here to judge and even though I have never been faced with this situation I must say I KNOW that we would have the baby.  My husband and I are both Christians and feel like it is God's decision to give and take life not ours.  Even when we miscarried we made them do multiple u/s just to be sure there was nothing that they had missed.  We have talked about this before and we decided that we would take and love whatever God blessed us with.  As hard as something like that would be we know that God would never put anything on us that we could not handle.  But when we do get pregnant we don't want to be told about any disorders we prefer to not have the testings done.  Also if we had one child with a disorder and we wern't sure we would be able to care for another child with the same needs i dont think we would continue trying for another child...if we really wanted another baby we would probably at that point look into adoption or something else...  I hope that your cousin makes the best decision for her hard situation.  Hope my insight helped.  

[sck08]

How can an amnio tell her the baby has autism?  They dont even know what is causing autism and it isnt diagnosed until around 15 mo old...I would question her doctor and get a second opinion.  I have NEVER heard of this.

[kris777]

I agree with Rachie in that we don't even have the testing done at all for disorders because we would have the baby and keep it anyway, plus those tests CAN BE WRONG.  Then you would have to live with that decision wondering about it.

[sfritz]

That would be a hard decision. I know that I personally could not terminate because of a chance of autism. I don't know if adoption would be an option for her. A good friend of my family and her husband have been trying to adopt for about 5 or 6 years now, and just got an email the other day letting them know that there are special needs children right now and that is it. In the next month they are going to be getting a little girl (1 year old) that is albino. They know the risks that come with this baby (autism, blindness, etc.) but decided that they really want to have her and give her all that they can.

[prayerful wife]

Thanks, I'm emailing them to her now.  With her son she didn’t find out about his autism until he was about 18mths.  He was having some developmental issues.  Mentally he caught up with his age range, but when he's not medicated he is off the chain.  I'm not sure what/how else they tested her besides the amino.  I don’t know if they gave her any kind of chromosome testing but I hope they are giving her the correct info before she decides to terminate.  I asked her was he testing for downs b/c that’s the only thing I would think that they would be able to give her maybe a 50/50 answer on.  I suggested a 2nd opinion.

[sck08]

Ok, after thinking about it more, I am sure you can not detect autism through an amnio.  There is no proven fact on what is causing it so she could not have gotten this diagnosis.  This is what I found...

Typical autism undoubtedly has a significant genetic basis. It is likely that multiple genes are involved, but the precise recognition has remained hard to pinpoint. Prenatal diagnosis requires prior and precise recognition of the genetic mutation in question. Therefore prenatal genetic studies for autism are not yet possible.

[Atia_Julii]

I also have never heard of autism testing during pregnancy.  Sounds very odd.

A couple people mentioned that they wouldn't even want testing done.  I think even if you are 100% sure you would keep your child regardless, I think testing is so valuable just to prepare the parents.  I have a friend whose baby was born with down's syndrome, and unfortunately they didn't do the testing, so it was a surprise at the birth.  She would have kept and loved her baby girl regardless, but at least testing would have prepared she and her husband for all that came next.

Along the same lines though, I was reading an article on CNN, and they were saying that they now perform down's tests on everyone, and that because of it, abortion rates have gone up.  I found that very interesting.

[kris777]

Thank you for passing that along:)  I think she should surely get a second opinion and if they can tell her with 100% certainty, then I would make a decision.  Sorry your family is going through this:(  I can't imagine!  Good luck to you.....

[prayerful wife]

I just called her back and asked what all the doctor did for her.  She said that they did what they call an "early amnio", drew some blood for genetic testing, and did a pap.  I told her for her own piece of mind ask that they put her results in an envelope and please find a geneticist or neonatologist to give her a 2nd opinion.  She has military benefits so the insurance shouldn’t have a problem with it.  I'm glad I asked you guys; when something doesn’t sit right with you, most of the time it's not right!

[smithin]

OMG YOU CANNOT TELL IF A FETUS HAS AUTISM...TELL HER TO RUN AS FAST AS SHE CAN AWAY FROM HER OB!!!!!!  Sounds like she should be searching for a new doctor.  NOONE knows for sure what is causing autism so a diagnosis on a fetus is ridiculous!!!

[kris777]

I agree that some people might want to be prepared and warned ahead of time if their baby will have a disorder, but I still don't..................because I know personally of a few people that got false positives and then the baby came out normal.  They said it was horrible for them to have to go through the rest of their pregnancy thinking this was the reality.  I don't know--I guess to each their own on that deal:)

[rachie204]

Atia- Wow that is very interesting about the testing and abortion ratio.  That is so very sad....I have had the opportunity to meet children with Down's and they are truly the sweetest children in the world and they are usually so happy too.  I can't believe people would kill their child just b/c it wasn't "Normal" according to the worlds standards.  My husband and I want a baby so badly and after suffering one possible two miscarriages we would honeslty be thirlled if God gave us a baby with Down's.  Yes it might be challenging but they are very amazing children and a beautiful gift from God.

[kris777]

Wow--she definitely needs to get a second opinion from an expert in the field.  I would be VERY hesitant to accept what the doctor said strictly based on that testing.  I hope everything is fine:)

[Atia_Julii]

kris777, you make a great point about false positives.  That would be so heart-wrenching to get a false positive, and have it be wrong.  Makes me understand why people wouldn't want to do testing.

[prayerful wife]

Oh My God!  I think she has an attitude with me for sharing this with people.  But like I let her know I'm trying to help her make an informed decision so she doesnt end up doing something that she regrets.  She just got these results Friday, so being that her hubby is overseas she hasnt told him yet.  I told her I havent shared this with the family, that's not my place to tell them.  I'm just coming to a trust worthy source (you guys!) to help her a** out!

[kris777]

I know--that is really my reasoning since they can be wrong.  My son was born with a heart defect so of course I am scared about this pregnancy:(  They say it shouldn't happen to me agian so I really hope not!  Scary...........it can be difficult.

[Atia_Julii]

I myself was born with a heart defect. . . My parents didn't know about it until I was born, but it makes me scared that some people would have an abortion because of it.  Afterall, I think I turned out okay. ;-)

[rachie204]

aww i'm sorry she's upset.  She is under a great deal of stress i imagine.  I'm sure she will see that you were just trying to help.  You were doing the right thing.  It's not like we know her and can point the finger at her and stare or something...we're just a third party.

[kris777]

Sorry she is upset--I hope she understands that we don't know her and we are totally anonymous.  We are strangers that genuinely care:)

[kris777]

Wow--sorry you were born with a heart defect............my son is great too and am sooooooo blessed to have him:)

[sck08]

She shouldnt be upset, we dont know her...also, even if you could detect autism-it is a disorder that is totally manageable...look at Jenny McCarthy's son.  I would never get an amnio-the chances of M/C are higher than something being wrong w/the baby.  My good friend had to get an amnio because of her age (40) and she was told something was wrong w/her little girl..well she is 11 months old now and she is perfectly happy and healthy besides reflux of the kidneys that she takes meds for...

[evthing4reason]

this is a very tough thing,, it is also a very personal thing, she she needs to do what is right for her and her family not anybody else in the world. does she thinkshe is strong enough to handle even more of what she is dealing with, is her relationship with her partner strong enough to deal? it can only be a decision made between her and her husband

[prayerful wife]

She just got off the phone with the doc's office and she said they explained to her that b/c she already has a child with known autisim that they tested her with new technology that has not been "approved" but has an 80/20 rate of being correct.  Again I told her to def get a 2nd opinion, and in the end it will be up to her and her hubby.  He's a great father to her 9yr old even tho he's not his biological father.  I truly pat him on the back for taking on a roll that the real father ran from.  The thought of having double that kind of responsibility I know for her is a life changing commitment that she cant decide on over night!

[beautifullychaotic]

I think she should get a second opinion for sure. BUT if you have one child that is autistic then the more kids you have the more of a chance that the more you have can have it as well.  I know this because when I worked at a daycare there was a family with 7 children 5 or 6 (I cant remember) of those kids were autistic.  And some were more severe than others.  Its a tough choice I am sure. But me personally would not be able to not love that child!  Its a part of me either way! But I always look into second opinions. Good luck to her!

[KellyA74]

I've never heard of being able to detect autism thru an amnio???  Must be something new that they came out with.
This is such a tough situation......DH and I had discussed this when I was pregnant and trying to decide whether or not to even have the triple marker done....
We had decided that the ONLY way that we would ever consider not carrying to term would be if the baby's quality of life would be poor.  For instance, if it would have to undergo multiple surgeries, had a minimal expected life span and would spend it's short time in and out of hospitals and in pain,etc....Some people may say that I'm bad for saying that after we've been trying so hard to get pregnant...but that was our decision.....
This is a tough decision that only she and her husband can make......I just can't understand how they can detect prior to birth...Interesting.

[Rosa20]

this is just my opinion but i would deff have the baby no matter what! I would choose to love the baby either way but then again thats just my opinion!! Everyone is diffrent and entilted to there own!!~ I would def understand tho if your cousin wanted to terminate!! She has to be tired but just reassure her that there is a chance that the baby could come out fine!!! And if the baby does come out with autisim let her know she would have help!

[budjaz]

well i love the positive responses on here.. so encouraging.. i had a triple test that came back positive and the doc wanted me to do an amnio and i refused... i do not care if something was "wrong" with my baby... who are we to define what is "normal" and what isn't.. .. i had a friend too who had a  baby with a chromosonal defect... didn't know about till it was born.. i was so amazed by this woman.. that little boy couldn't have been put in a more loving home.. they are not wealthy by any means.. but that child has done more then the doctor's every perdicted and she told me one time that she feels so privileged that God would choose her to raise a baby like that... she felt special that God knew she could do it and could love that baby the way he needs... things work out the way are supposed too.. sometimes they are hard.. but to see that little boy light up when he is with his mom.. is beautiful!  

[KellyA74]

Oh..just wanted to add that those tests are not always accurate...Again, not sure what testing they did to confirm that this baby would have autism (still stumped by that one)....but there have been many cases in which people have been tols that their babies would have defects and they were born perfectly healthy......

[Gina209]

I'm not sure what kind of test they give Pregnant women to test for abnormalities, but there is something they do...all I know is when my Mom was Pregnant with my brother she was 40 years old and considered very high risk. She had to go to this special doctor in the city to get this test to make sure the baby was okay. It might have been an amnio but it could have been something else. I was only 10 at the time so I don't remember exactly what the test was called. However, they told her that he would most likely have Down Syndrome. My mom was really upset but she would love her baby no matter what, so she gave birth and he was a very healthy 10 pounder! No abnormalities whatsoever. So the doctor and the tests were wrong...So there is a test they provide, but I guess its not always correct! Thats the difficult thing, doctors aren't gods, their not always right.

[JoyRenee]

Well, back to your original question, I am in complete agreement with what rachie204 said. I would never abort a baby, even if I was raped (God forbid, please) or what-have-you. It's a tough place for her to be in, I grant her that.

Hopefully she'll think long and hard about this.

[shasy03]

I teach preschool and I have an autistic child that comes into my class on occasion when his mom is working at the hospital in town.  He is 7 years old and all I can say is WOW at how busy he keeps us.  I would not change this experience for the world.  Personally, God has put these children in her life for a reason and he would not give her more than she can handle.  This came from the mother who found out right before Christmas that her 4 year old son also has autism.  This mother did not even want for Christmas to come because "A.J" and "B.J." did not even know what Christmas was.  "A.J." has full blown autism and has came a long way in the last 3 years.  "B.J." on the other hand has it mildly (A Tystic) or whatever it's called.  "B.J" ran to his mom and started yelling happy birthday mom when he saw the little Christmas tree placed in his room so needless to say she quickly put up all the Christmas decorations she could find.  

They are a handful but they are truly blessings.  I know this mother is exhausted to work full time and have 2 boys at home with LOTS of needs.  I would take the consequences and thank God for everyday I have with them.