Our baby has Down Syndome...advice needed

My mother in law was told my brother in law Austin was going to be down syndrome.  He's a very healthy normal 18 year old boy.

But, even if not.  My husband worked with the mentally challenged until his accident 5 years ago.  We have a special place in our hearts for these wonderful people.

One of my best friends growing up was a man who was 14 years older than me.  He was down syndrome and very much like a child.  He played baseball with us and was very sweet.  He works a job and is an honorary volunteer fireman.  He works very hard at the fire station helping with fundraisers, education programs for the kids and other such things.  When I think of my little town of 2,000 people, there isn't a person between 20-45 who has not played baseball with Stevie, or seen him at the school fire education programs. 

Stevie has touched the lives of many wonderful people.  Its hard to see him aging so fast.  Downs children physically age much faster.  He's leading a wonderful life and brought joy and smiles to our lives.

Before I became Mormon, I was Russian Orthodox.  The Church taught that people like Steve were called "Holy Fools" Nurodiya.  They were protected by God and could not sin because of the innocence of their minds.  They are very special spirits that are sent here with imperfect bodies as their test, but more as a test to all of us.  They come to teach us patience, compassion and love. 

There are many groups out there that help parents of down syndrome children.  There are also varying levels of the condition.  Stevie was very high functioning.  I would suggest talking to your Imam and suggesting to your husband that the two of you go to counseling.

At worst, if you cannot care for the child, there are adoption programs and care facilities.  That is a heartbreaking decision, but its what my husband did for a living for 10 years.  He enjoyed working with these boys.  If you want to ask him some questions, send them to me over PM, I'll give them to him and send you the responses. 

I will have you in my prayers 222.

I'm not sure abuayisha.  My mother-in-law died before I met my husband from complications from gastric bypass surgery.  The only reason I know this is that my father-in-law is still outraged that the insurance company told them they would pay for an abortion but not for the delivery because the child was going to be down syndrome.  The doctor threatened to side with my in-laws in a lawsuit and the insurance company changed their mind.  Austin was born healthy...so whatever tests were wrong...

But, even if he hadn't been healthy, my Mother-in-Law did not want to abort her child.  She was a nurse and strong in her faith that abortion is sinful.  She was chosing to have the baby no matter what.

But, that was secondary to the rest of my comments, the idea that someone is "less" because they are Down's or that they cannot have value is wrong.  People like my friend Stevie show that they can have a lasting and positive impact on the world. 

I remember assisting the firemen get ready for a banquet.  Stevie helped me hang the decorations and later asked me to dance at the banquet.  In our society, that's not wrong.  It was a sweet innocent dance.  Its very hard for Stevie at times, people treat him a certain way, he's not st**id or useless and it hurts him when people discount him.  Now, there are times his limitations must be explained to him.  He wanted to learn to drive the trucks.  He's innocent, like a 5 year old.  So, sometimes he needs guidance and a little extra attention, but that doesn't mean he's less of a person.

Its not a shame to have a sweet innocent child, its a shame to forget that all we have and all we get is from God.  If God grants us protection over one of his special children, we should take it as a test and a blessing, not a mark on our families or a curse. 

As Muslims, I think that would be center to a situation like this...accepting God's will.

222dnallohc wrote: Assalamu Alaikum, I am currently 14 weeks pregnant with our second child.  After some testing, we found out that our baby has Down Syndrome.  We have been given the choice as to whether to let the pregnancy continue or not.  Obviously it is forbidden for us to terminate the pregnancy...and I dont want to do that anyway.  My husband unfortunately does not think that he can handle this and he wants me to end the pregnancy.  He thinks the baby being disabled will tear our family apart and it will be a disgrace for him to have a son that has the problems that come with Downs.  He told me that in his culture, he is Arabic, that its a disgrace to have a child like that. Needless to say I am absolutely shocked to hear this come out of his mouth.  I want to raise my son (we found out the baby is a boy), but my husband does not want him. This seems like such an impossible situation for us right now.  How do I get through this?  I feel like he is trying to push me to do something I dont believe is right.  We are both Muslim, so I would have thought he would respond differently...thats why I am so shocked at his words. What do I do?

Down Syndrome is a psychologically devastating disorder among other developmental disorders in children. I was fortunate enough as one of my clinicals for my license in Neuroscience to evaluate a child with Down Syndrome. The parents, both Caucasian, wanted to care for the child. Now, I understand that perhaps culturally, we all think different or perhaps other factors play into why we would or would not accept a child with a developmental disorder. I believe not only the disorder itself, is devasting to parents but the life expectancy as well. On average, most children that grow up into adults have an average life expectancy of 49.5 years of age with mental retardation that possibly fluctuates between IQ ranges of 50-70 (Considered mild by clinical standards) to severe mental retardation (35-50).

Decisions to terminate pregancy is largely based upon what "the parents do not want to deal with" and quite honestly, if I were in this situation I wouldn't want to deal with it either. HOWEVER, because life is indeed precious and important, it is also important to not terminate possible life all beause of what makes us feel good and what doesn't it should be based upon the decision between both parents. I think the only good reason to terminate a fetus especially if trisomy 21 is detected is because the child will not have a full life and that, letting it live only to 50 years of age without accomplishing all possible goals in life is distressing. Perhaps that is the only argument to terminate a child, other than that the ethical implications are subjective and must be made on case by case situation.

Angela, you disgaree with me for religious reasons alone not necessarily medical one. We don't know God's will and only interpret "will" by what we perceive as either good or bad and whether God decreed it or not. I don't understand your idea of "severe" and "less severe" so maybe you can interpret what you are referring to. I mean, I've actually assessed patients with this genetic disorder so it's not like I'm blabbering about something I don't know.  It's easy to deal with something by putting a religious spin on it, heck I've read cases in India where an autistic child was thought to be sent by God because of its condition. I believe in God's will, but I also believe in the human brain and the intelligence of science. I have spoekn with parents who find it hard to deal with children with disorders. Perhaps looking at things in a religious matter is good, but it is no less sufficient for a medical assessment.

Edited by Israfil