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Our baby has Down Syndome...advice needed

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Category: Culture & Community
Forum Name: Groups – Women (Sisters)
Forum Discription: Groups – Women (Sisters)
URL: http://www.IslamiCity.com/forum/forum_posts.asp?TID=10750
Printed Date: 01 August 2014 at 3:01am


Topic: Our baby has Down Syndome...advice needed
Posted By: 222dnallohc
Subject: Our baby has Down Syndome...advice needed
Date Posted: 24 November 2007 at 3:05pm

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?




Replies:
Posted By: abuayisha
Date Posted: 24 November 2007 at 4:01pm
http://www.islam-qa.com/index.php?ref=12118&ln=eng&txt=abortion - http://www.islam-qa.com/index.php?ref=12118&ln=eng&t xt=abortion


Posted By: Hayfa
Date Posted: 24 November 2007 at 5:37pm

Salaams,

What a difficult situation. Especially if the parents are not "on the same page.

Where do you live? Are you in the US? I have to say there are problems in every coulture but the US has some of the best services with People with Disabilities. And the opportunities that are presented are quite profound. I know in some places in the world, people with disabilities are shunned, cast out, hidden away etc. Probably due to the many resources and the culture, the US is not like that. So it may be a difference of "culture" between you and your husband.

Abuayisha has provided a link regarding aborting the child. Of course it lists for physical deformity that makes living prohibitively difficult.

Here are some other links that are about having Children with Down Syndrome.  In the US it is NOT the end of the world. I don't know where you live.

It is sad that he feels it is a "disgrace." And ties it into his Arabic culture. The child is a child from Allah. Just as any other child. And one thing it teaches us is compassion and mercy.

I had a good friend in college. He was a staff worker at the school. His daughter was born with only half a brain. The daughter is not a senior in college.

I hope these help you to make the decision.. there are no easy answers

http://www.ndss.org/index.php?option=com_frontpage&Itemid=87 - http://www.ndss.org/index.php?option=com_frontpage&Itemi d=87

http://www.nads.org/ - http://www.nads.org/

One thing that struck me was in the last line:

Screening Tests

  • At this time the most commonly used screening test is “The Triple Screen.” This is a combination of three tests that measure quantities of various substances in the blood. These tests are usually done between 15 and 20 weeks of gestation.
  • Sonograms (ultrasounds) are usually performed in conjunction with other screenings. These can show some physical traits that are helpful in calculating the risk of Down syndrome.
  • Screening tests do not accurately confirm the diagnosis of Down syndrome. In fact, false positives and false negatives frequently occur.  

My duas are with you and your family.



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When you do things from your soul, you feel a river moving in you, a joy. Rumi


Posted By: herjihad
Date Posted: 24 November 2007 at 8:22pm
Originally posted by 222dnallohc

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?


Salaamu Alaykum Sister,

In my experience, men who are foreigners to this country will create traditions inside their native culture to suit their own feelings either cognitively or subconsciously, saying things like:  My mother would NEVER do THAT. 

That being briefly touched on, I will tell you about a wonderful Phalasteenee Arab family who cared for and loved their Down's Syndrome Boy.  They took him out with them to "moonasibat"  important occasions-visitations.  They had him with them in the visiting room when others visited.  They talked to him with love, care, concern, and the thing I noticed most of all was that they listened to him as much as they expected him to listen to them.  He was an integral part of their family, loved by every single one of them that I saw.  I never noticed a sideways glance of distaste or a sense that anybody was uncomfortable with him.  There was also a bus that came for him and took him to a special school.  He was happy and eager to go there and also content to be in his home.

The Arabs I know would be honored to take care of such a special child.  Maybe your husband is sensitive for his own reasons.  Maybe his family has never confronted such a challenge, and he is not sure they are up to it.  But I really believe that most Muslim Arabs are up to such a challenge and will look for the blessings that raising and loving such a child will bring them with Allah, the Most Loving.

Talk to a sheikh that you know and trust.  Talk to his family.  Not many people would support an abortion, and it sounds like you need some people on your side to help him make the right decision.


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Al-Hamdulillah (From a Married Muslimah) La Howla Wa La Quwata Illa BiLLah - There is no Effort or Power except with Allah's Will.


Posted By: lovesakeenah
Date Posted: 25 November 2007 at 2:27am

AS-salaam alaykum warhamatullah wabaraktuh

I was also going to refer you to'islamqa' but glad that abuayisha  already did.Meanwhile,I've equally read that 'abortion' on health grounds like if it's a threat on the mother's life is permitted within the first 120 days of conception.Apparently,you have even exceeded that now.I don't think you can do the convincing of your husband alone.In the first place,he was more concerned about his own prestige of being a father to a'disabled child'.

Like Hayfa said,there're provisions for such children,if you're resident in the US.Even if that isn't the case,"Dawn Syndrome" happens to be one of the commonest deformity in this age especially for mothers who're in their forties.Their being told all these probabilities before they decide to conceive&bear a child.

You need to make him understand that Islamically,it's already too late to consider abortion,otherwise you'd be committing 'murder'.And again,there're several other deformities that're worst than 'Dawn Syndrome'.People with DS still live a normal life,provided the families're willing to learn more about this defect&give that child all the love&care they would give a normal child.

Wallahu an'lam.

I pray ALlah softens your husband's heart&make him accept this as a test of his faith&i pray he'd have the eeman to go through it masha Allahu!!!

Meanwhile,on your own part,get more informed about DS.lRead it up on the Internet or any Book on it.And there're so many experien ces of people living with DS you can share in order not to fel left out&confused.



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"I have conviction that Allah has power over everything.Verily!Allah's knowledge includes and encompasses everything".


Posted By: mariyah
Date Posted: 25 November 2007 at 2:51am
Asalaamu alaikum:
Sister, may I invite you to refer your beloved husband to the sections in the Holy Quran where Allah subanallah wa taa'la  condemned the killing (burying alive) of female infants because having a female child was a disgrace to the culture?

Please think about this subject really hard. If you are in America this choice is yours. Allah wills what He wills. And consider all the good advice given to you before this post. And think about how whatever choice will affect your deen and your state of well-being in the future, can you live with your decision? Can you live with your husband if you feel he pushed you into this decision?
May your retain the protection of Allah subanallah wa taa'la and may your decision be according to his dictates.
Wasalaam.


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"Every good deed is charity whether you come to your brother's assistance or just greet him with a smile.


Posted By: aamna
Date Posted: 02 December 2007 at 11:08am
asalam alaikum,

the other sisters have given you good advice.  one other thing i wanted to add was that the test that tests for down's syndrome has a  very high rate of false positives.  so it could be that your child does not have down's at all!  this happened to a friend of mine, in which her child tested positive for down's, they stressed out so much and did as much as they could to prepare for the child, but when the child was born he did not have it. so it is certainly not a definitive test, hopefully your doctor told you that.



Posted By: herjihad
Date Posted: 02 December 2007 at 11:17am
Originally posted by aamna

asalam alaikum,

the other sisters have given you good advice.  one other thing i wanted to add was that the test that tests for down's syndrome has a  very high rate of false positives.  so it could be that your child does not have down's at all!  this happened to a friend of mine, in which her child tested positive for down's, they stressed out so much and did as much as they could to prepare for the child, but when the child was born he did not have it. so it is certainly not a definitive test, hopefully your doctor told you that.



Salaams,

Thank you for sharing this story and the facts in it!  I didn't know this.


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Al-Hamdulillah (From a Married Muslimah) La Howla Wa La Quwata Illa BiLLah - There is no Effort or Power except with Allah's Will.


Posted By: Angela
Date Posted: 04 December 2007 at 3:12am
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.




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Posted By: abuayisha
Date Posted: 04 December 2007 at 4:45pm

Originally posted by Angela

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.

Which test was she given?  Just to make sure we're not comparing apples with oranges.



Posted By: Angela
Date Posted: 05 December 2007 at 4:38am
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.


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Posted By: abuayisha
Date Posted: 05 December 2007 at 8:06am

Originally posted by Angela

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

The Muslim army in Syria was also hit by an epidemic. So heavy was the toll taken by it that the Amir Omar ibn AlKhatab himself had to go to Syria to study things. At Saraa, he was received by army leaders. They implored him to keep out of the affected area. The Calpih sought the advice of leading Companions. They differed. At last Omar chose to go back. Seeing this, Abu Obaida said "Omar, are you running away from the decree of Allah?"

 

"Yes," replied Omar, "I am running away from the decree of Allah to the decree of Allah."

 



Posted By: Israfil
Date Posted: 05 December 2007 at 3:24pm
Originally posted by 222dnallohc

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.



Posted By: Angela
Date Posted: 06 December 2007 at 12:38am
Originally posted by abuayisha

Originally posted by Angela

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

The Muslim army in Syria was also hit by an epidemic. So heavy was the toll taken by it that the Amir Omar ibn AlKhatab himself had to go to Syria to study things. At Saraa, he was received by army leaders. They implored him to keep out of the affected area. The Calpih sought the advice of leading Companions. They differed. At last Omar chose to go back. Seeing this, Abu Obaida said "Omar, are you running away from the decree of Allah?"

 

"Yes," replied Omar, "I am running away from the decree of Allah to the decree of Allah."

I have a serious disagreement with this comparison.  Abortion is an unnatural act.  Not going into a plague area is just common sense. 

Abortion is something I am completely against, in my humble opinion life is created by God's will.  If he does not intend for a child to be born, its not. 

Now, that being said, that is MY opinion and MY choice.  I'm anti-abortion, but not anti-choice.  222 doesn't want to terminate, her husband is pressuring her on cultural notions of shame and not on a knowledge of the possibilities good or bad.  That is why I suggested counseling and if at worst adoption.  She should not be forced to do something she regrets and he should be drug out of the stoneage into reality.  Down Syndrome children are special.  Are they easy to raise? 

I disagree with Israfil's assessment.  But, I've known more than just Stevie through my husband's work.  There are various levels of down syndrome, some very severe cases never lead a "normal" life...others are wonderful, loving people who have jobs, homes and live almost completely independently.

So, what is God's will?  Why did he allow for this child to be created and with this condition?  I go back to the Orthodox belief that these children are messengers of patience, compassion and love.  They test our hearts and our souls.  They are special and deserve love, not to be despised because they are different.  In Russia, its said that a person who harms a Nurodniya is going to hell. 





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Posted By: Israfil
Date Posted: 06 December 2007 at 12:44am
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.


Posted By: Saladin
Date Posted: 06 December 2007 at 1:04am

Assalamu Alaikum Sister,

I really dont know what to say here but pray that things work out right.May Allah guide and help you during these difficult times.

I had a friend in highschool who had Down's syndrome.I didnt know what it was then.I just thought he was slow and slightly challenged mentally.He wasnt active in sports and had learning difficulties.I should say that his family;his mother and sister and our principal in school supported him very much.His sister was a doctor and due to her efforts,we saw a gradual improvement in him.He graduated with me and i've lost touch with him since but i've a feeling that he'll be doing good.Allah knows best.

Sister,i dont think abortion is right in this case as people with Down's syndrome have lived good lives.It would be against Islam.Understanding and support would help much.You should make your husband understand that being born healthy and normal doesnt mean a good life is guaranteed.The healthy and macho son could be run over by a bus and end up being handicapped or in a coma.Perhaps your husband should abort his unhealthy mentality.

I think the following site will be really helpful.Its got a lot of information.

http://children.webmd.com/tc/down-syndrome-topic-overview - http://children.webmd.com/tc/down-syndrome-topic-overview

   



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'Trust everyone but not the devil in them'


Posted By: Angela
Date Posted: 06 December 2007 at 3:25am
Originally posted by Israfil

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.


Not all Down's Syndrome children/adults have the same functioning scale.  They like all of us have varying IQs and mental function.  Some of them can learn to read, hold jobs, care for themselves like cooking, laundry and even act.  Chris Burke was on the hit TV show Life Goes On.  There are also some children with Down's Syndrome who have secondary diagnosis or did not receive the proper care in their childhood who must be institutionalized because they cannot care for themselves.

You always point to it being religious in nature with me, sometimes its not.  Sometimes the religion reflects my own feelings and is not the cause of them. 

I'm glad you got to meet one or two people with Down's Syndrome.  I've known people with this condition my entire life.  I lived in a small town with less 900 residents.  I grew up playing with them, talking to them and experiencing their lives as a friend.

A day of clinical study does not make you even remotely qualified to dispense even the slightest professional opinion.  My husband who worked with the handicapped for 10 years would tell you most doctors don't have a clue.  Only the direct care staff.  He dealt with the worst of the worst.  The adult diapers and 350lb man with the mentality of a toddler throwing refridgerators.  And you know what?  He misses every blessed minute of it.  He misses the light in the eyes of the man when he finally can finish the puzzle or the laughter as one of the guys pulls a prank on him. 

These are PEOPLE.  You all are acting like its some sort of choice.  Its not a choice, its a child.  There is no difference in the abortion choice of a "normal" baby and one that "might" not be able to lead a "normal" life. 

For the Stevie's and the Chris Burke's of the world, I hope you all forget the clinical/sterilized eugenics of the world and start viewing the human qualities.


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Posted By: Angela
Date Posted: 06 December 2007 at 3:27am
Here is the link for the National Down Syndrome Society...

Go to the right people for the important information...not a cop who seems to be an expert in everything.

http://www.ndss.org/ - http://www.ndss.org/


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Posted By: Hayfa
Date Posted: 06 December 2007 at 7:37am

Angela, I agree..

And really, it is like saying we can tell who will turn out like what.. And we should "elimate" all of those who are a "burden." The issue is more about how we view our society and our resources. And what we value and where we invest our energy and time.

It can tie into making sure that we have "purity" and the "superior." And really, how do we define a full life. I haveahighereducation degree. Some people don't. And you know what, they don't want to. They have other interests, other roles in life.

And really, what is a "normal" life anyways..



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When you do things from your soul, you feel a river moving in you, a joy. Rumi


Posted By: abuayisha
Date Posted: 06 December 2007 at 8:46am

Originally posted by Angela

So, what is God's will? 

The will of Allah, Most High, has two levels.  First is His legal will, such as ordering us to pray five times daily, fasting, hajj, charity etc.  We are not allowed to question His legal will, saying such things as “why not four prayers daily” or Ramadan should only be 15 days and not an entire month.  The second level is natural occurrences, such as the example of Omar and the plaque.  Omar is not obligated to enter an area of plaque because it is Allah’s will that it was affected by sickness.  If a child is born with two heads or three legs, conjoined twins or other such birth defects, this is Allah’s will, but we are not obliged to not seek remedy to change these happenings.  In other words, to say that if Allah, Most High, did not want him to have two heads, who am I to seek a surgical procedure to remove the other head.  The father in this case does not feel that he is able to bear the difficulties associated with a genetically diseased child and that it may very well tear their family apart.  I believe he has that right.  



Posted By: Israfil
Date Posted: 06 December 2007 at 9:17am

Angela you said:

Not all Down's Syndrome children/adults have the same functioning scale.  They like all of us have varying IQs and mental function. 

Angela, your comment above is the result of reading too much into my post and actually not reading it. If you read, you'd notice what I said in a previous post by the following:

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 moderate mental retardation (35-50).

Cognitive abilities in children vary yes, but their cognitive abilities are limited and children (and adults) with Down Syndrome do not perform tasks the same way we do regardless whether they are on television shows or not.

Some of them can learn to read, hold jobs, care for themselves like cooking, laundry and even act.

Like I said cognitive abilities differ and many individuals suffering from Down Syndrome have underdeveloped motor skills (which is why "special schools are required to assist those with this disease). Your comments here are misleading to those ignorant of Down Syndrome because you are presenting individuals with disorder as if they could function "normally" and although many of them can, again, they require more assistance with tasks than the average "normal" individual.

You always point to it being religious in nature with me

Well you are and it comes out in your writing. It's not a bad thing, it's what I see.

I'm glad you got to meet one or two people with Down's Syndrome.

Where in my writing did you see that I said I "met" one or two people with down syndrome? Again, this is a product of reading too much into my posts rather reading it (also reading my posts with your emotion rather than simply reading it).

I've known people with this condition my entire life.  I lived in a small town with less 900 residents.  I grew up playing with them, talking to them and experiencing their lives as a friend

That is great and its good that individuals such as yourself were able to experience this, however, as I stated above stop reading too much into what I said, rather, read what I say. I know for a fact I have knowledge of this disorder more than majority of the individuals here. I've had the luxury of using FMRI's to look at differences and variability between those with Down's and those without Down's. I've conducted an average of +2500 hours of AFP screening and Quad screening, as well as PAPPA screening for expectant mothers. I've assessed many patients with organic brain damage. Having an amatuer's knowledge of disorders is no substitute with actually practicing.

A day of clinical study does not make you even remotely qualified to dispense even the slightest professional opinion

I again have to remind you about reading too much into what I wrote. did I say 1 day? I've personally assessed many patients with developmental disorders  and down syndrome is one of them. But allow me to clarify, as residents, we are basically Dr.'s in the sense however, because when I went through clinicals I had so many patients (in addition to my other job) I could not possibly focus on one specific individual (or condition) this is why I chose the broad field of Neuroscience, that means, what I've spent thousands of hours on are evaluations using FMRI (Functioning Magnetic Resonance Imaging). Like I said before, I don't blabber about something I truly do not know.

These are PEOPLE.  You all are acting like its some sort of choice

It is every right for every parent to decide what to do with their child, thus, making it their choice. Just because you define your morality on the basis of your faith does not give you or me or anyone here the right to tell someone what to do with their child even if we disagree. I said before that the decision is up to the parents and I refrained from putting my own moral implications in it. I only mentioned on possible defense of someone who may abort their child.

 



Posted By: Angela
Date Posted: 06 December 2007 at 11:31pm
Originally posted by 222dnallohc

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.  ...

  I want to raise my son (we found out the baby is a boy), but my husband does not want him.

...  I feel like he is trying to push me to do something I dont believe is right.  ...

What do I do?



Israfil,

READ her post again...

She doesn't need justifications.  She WANTS her baby.

She needs to get both of them into support groups with other parents of Down Syndrome Children.  She needs to meet Down Syndrome children and adults.  Her husband needs to meet some of these wonderful people.

Yes, Down Syndrome people live short lives, hard lives.  But so do cancer kids, children with heart conditions, conjoined twins, premature babies, crack babies, sickle cell babies.

Where does it stop and become eugenics?  Indiana used to force sterilize patients who were mentally retarded.  Here in the US prior and post WWII.  The Nazis sterilized the mentally ill and unfavorable races.

Parents should not be encouraged to abort based on cultural/societal norms.  The world today forgets why we are here, who we are and what we are supposed to be doing.

I thought about this all day... there was a time in the Middle East where girls were considered so undesirable that they were buried alive in the sands at birth.  The Prophet Muhammed (pbuh) stopped this barbaric practice.  He valued life so much. 

Perhaps my faith in God influences some of my views.  But, my humanity influences my views on Abortion.  I've not always been a practicing Christian.  I spent a long time as a lost soul.  Even then I believed that abortion was not the choice. 

In the end, what 222, needs...support.  She needs people to tell her that her son can have a good life.  She needs to know there are resources out there to help her and her husband educate their child.  She needs to know that there are others who have been there that can reach out and help support her.  She doesn't need told things that no one really has any way of knowing.

Today's experts have many new techniques for improving the quality of life for people with disabilities.  Specialized education programs, skills programs and socialization programs.  Her son will be able to go to school, get a job, hang out with people like himself.

These are the things she needs, especially if she's been pressured by someone who's only experience is cultural stigmas and not the reality.

Perhaps I read too much into your post.  I just think people need to understand what she wanted when she started this post.  She wanted support for keeping the child, not assurances it was okay to get rid of it.


-------------


Posted By: Israfil
Date Posted: 07 December 2007 at 1:02am

Angela,

You're a "God conscious" person because you sincerely care for this individual that is why I respect you a bunch. I guess what I'm trying to say here as a male is, what she wants is her choice. Her husband trying to prevent her from having the child is not right because in essence, he is telling her what to do with her body. I agree with you in that children with Down Syndrome are persons and deserve the same respect as any human being. I also agree with you in that those living with this genetic disorder can live functional lives (although rather short than average expectancy). I apologize if I sounded cold hearted because I'm not. I love life and wish life to be fulfilled towards all human beings.



Posted By: mary68
Date Posted: 27 December 2007 at 1:13pm

Hello.  I want to tell you mystory.  I was pregnant in 1998 and again in 1999.  I had the triple screen tests done, and both times the test came positive for anecenphaly, a form of spinal bifida which means my daughters would not have any brain, or very little.  When a so called friend found out about my first daughter she asked what did my husband and I do to make God punished us.  I thought about it and told her that I do not believe that God is rewarding us, but he isnot punishing us.  That somewhere at sometime my husband and I must have done something to show God that we would treat this child with the love that is due a human being and we would treat that child right.  We did, she came early and we buried her.  The same with my second daughter.    My husband, who is pakistani, never questioned our decision to carry the babies as long as they wanted to go. 

It is a very hard choice and one I would not want anyone to have to make.  We chose to carry the girls and if they had been born alive we would have taken care of them for as long as they lived.  My husband had a hard time with the birth defects.  He felt that it was his fault.  Maybe what he ate or the water he drank, or the illness he had as a child caused it. Of course that isn't true.  Maybe her husband is afraid that it is his fault that the baby is ill.  My husband never told me this, but told this during counseling.  If she is the US there are so many things you can do for the child.  Treatment can begin as soon as the child is born. It is true the defect affects everyone different.  I rode the bus to high school many years ago, and on there were two down syndrome people, a boy and girl, along with a mentally challenged boy.  They went to a workshop, their job.  The two down syndrome people married, and had a normal child.  They were being helped by the girl's mother and father.  So they can have lives.

Okay I am sorry that I rambled, the upshot of it is that she needs to talk with her husband, see what his fears are.  Have him talk with the doctor. Just be prepared of all possibilities. 

I wish you well and will keep you in my prayers.

 



Posted By: Salams_wife
Date Posted: 27 December 2007 at 1:24pm
Those are really great points mary68 and I appreciate you telling your story.  You and your husband have a lot of compassion and courage to face such a challenge.  Not many people could have handled that situation.  If you don't mind my asking, were you ever able to carry a healthy baby?


Posted By: mary68
Date Posted: 30 December 2007 at 1:44pm
Yes we were able to.  We had a healthy son before our two daughters and another daughter a few years after them. Thank you for asking. 


Posted By: Salams_wife
Date Posted: 30 December 2007 at 7:42pm
Thankyou for replying and Thank God for the blessings he gave you, you both certainly deserved them.


Posted By: Megatron
Date Posted: 01 January 2008 at 6:25pm
Let me just say, I hope your husband fries in Hell for wanting to kill a baby for being born with Down's Syndrome. 


Posted By: Israfil
Date Posted: 01 January 2008 at 9:47pm

Originally posted by Megatron

Let me just say, I hope your husband fries in Hell for wanting to kill a baby for being born with Down's Syndrome. 



Posted By: abuayisha
Date Posted: 09 June 2008 at 8:57pm
Originally posted by 222dnallohc

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?

Does anyone know if she had the baby? Khair Insha'Allah.


Posted By: Chrysalis
Date Posted: 09 June 2008 at 10:56pm
Sorry If I may be diverging from the topic. . . but since there was a discussion about Down's Syndrome. . . and some ppl here seem to know a lot:
 
Are there 'kinds' of Down Syndromes? For e.g I have heard that some are naturally docile and manageable whilst others are rather aggressive. I've had the privelage of meeting some. . . and while some are very manageable and docile . . .others I've seen scarily aggressive. . . to the extent that they are violent to those around them. (Some one told me its due to the presence of double Y chromosomes(the aggressive DS) )
 
So anyway . .. if this is true. . . can this be diagnosed during pregnance? As in which DS baby-type we r going to have. And if this is true, perhaps parents could opt for selective abortion . . . as in abort the aggressive gene ones. . .Cz they can turn out to be a threat to society. Whilst keeping the relativley normal ones. . .
 
Or does it depend solely on how you bring up a DS-baby and teach it how to behave?
 
Also . . . is Hijab to be observed in front of adult ppl with DS? Or are they to be considered 'masoom' , as in innocents.


Posted By: abuayisha
Date Posted: 09 October 2008 at 10:36pm
Has anyone heard from 222dnallohc?


Posted By: Angela
Date Posted: 13 October 2008 at 3:25am
I'm opposed to selective abortion mainly because I have known some wonderful down syndrome adults.  See my post about my friend.

But, it can be caught early, allowing parents to become educated and join the appropriate support groups.  Most problems come from families who do not know how to get the proper education and how to handle their children.

As for the "mansoom" thing.  I'm not sure how it is in Islam, but in the Eastern Orthodox Church, these individuals are called Holy Fools.  They are sent by God to teach us compassion and patience.  Its a grave sin to harm a Holy Fool and they are guaranteed a place in Heaven for accepting an imperfect body on this earth.   I may no longer be Eastern Orthodox, but I still believe harming one of these people (even before birth) is a grave sin and we fail that test. 

I cannot imagine my childhood without Stevie.  Nor can I imagine going to the Volunteer Fire Department in my home town without his smiling face.  Sadly, they do not live as long as we do and I fear I won't have my dear friend much longer.  I hope to see him on my next trip home.  His mother passed and my family said he has not done so well since she's been gone.



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