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What If My Baby Has Down Syndrome?

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On the one hand, I don't know if I could be the mother of a baby with Down syndrome. On the other hand, can I be a mother who terminates a pregnancy?

Pregnant woman

Guestblogger Mommy2b: Being pregnant with my first baby in my later thirties has been an experience filled with fear. One, because with my age (37) comes an increase in genetic abnormalities, miscarriage and health issues like Down syndrome. Two, because I have already suffered two miscarriages, both after the first trimester.

Rather than my doctor's visits being filled with excitement and joy to see my baby's heart beating on the ultrasound screen, they have been tainted with anxiety. Last week, I asked the technician to turn the screen away from me. She replied "Really? You are the first person to ever ask me that." "I'm scared," I said. "That something is wrong, that the heartbeat stopped without me knowing it." I always hold my breath until she nods the OK.

And now this: I have to decide whether or not I will have the procedure which tests for genetic abnormalities in the first trimester (the CVS test). Most people who do this test are prepared to terminate a pregnancy if the results come back positive for Down syndrome. I don't know what to do. Because I have had two miscarriages I want to know if something is wrong with the baby ... but what if something IS wrong? Can I be the mother of a baby with Down syndrome? Can I be a mother who terminates?

I have spoken to girlfriends who have gone through similar situations. They are all on different pages: Several have no problem terminating a pregnancy and firmly stated: "that would be no life for you or a child." Others are absolutely opposed to testing AND termination: "This is a gift from God ... you will love the baby so much -- no matter what."

Which mom am I? If I make either decision, will I regret it? If I keep the baby, will I wish I didn't? Will life be too hard? Will my child and my family suffer? If I terminate the pregnancy, will I forever regret it, and wonder if I could have made a good life for my baby? Will I feel selfish and guilty? 

Help.


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107 comments so far | Post a comment now
Nicole M February 17, 2009, 10:06 PM

My daughter Tarenne, who has Down syndrome is 9 years old. She has 3 sisters. I love all of my girls, but hands down, Tarenne is my easiest. She is polite, cares about others with ease, is doggedly determined to learn and achieve, melts my heart and my husbands several times a day, and is everything that I would have ever dreamed my child could/should be. I once said, “Darrah (my oldest) was the child we wanted, Tarenne is the child we needed”. Now I know not only did I need her but she is more than I could have ever dreamed ANY child would be. I thank God daily for her… literally. She is my gift!

Amy February 17, 2009, 10:49 PM

My husband and I are therapuetic foster parents for special needs children. We are in the process of adopting the most recent one placed with us. I would encourage you to think about adoption when it comes to dealing with this situation. It is true that not everyone can handle a special needs child, but there is actually a waiting list in the USA of parents wanting to adopt Down’s Syndrome children. I know I would be very open to adopting one of these children… something to consider.

Jenna February 17, 2009, 11:17 PM

There is this thing called unconditional love. Maybe you’ve heard of it? It’s what we are supposed to feel for our children. As the mother of a 14 year old child with Lissencephaly let me assure you that life caring for a special needs child is hard. Hard like you cannot imagine. But it is also a life filled with blessings and the best of those blessings is my special needs child. As the mother of a 10 year old “normal” child I have learned that there is no such thing as normal. Trust me, your life is going to be hard as a parent no matter what! I think it is irresponsible to get pregnant assuming you are going to have a “perfect” child. If that is the only child you can love then maybe you don’t need to get pregnant. And one final thing - you will do better than you think. I would never have imagined myself as a mother to a child like my daughter. Never could have imagined it but honestly, it’s just like everything else that happens in your life. You work through it, you deal with it and it is just the “normal” for you.

Karen February 18, 2009, 2:09 AM

I have three “typical” daughters, and I have one son(my youngest)who has autism. It is a challenge & joy to raise ANY child, and while it is true there are big challenges in raising a child with a disability of any kind, there is also BIG joy & a deeper, richer experience in parenting. My daughters are so wonderful, my son is so wonderful—and each have their own strengths, each has their own weaknesses. My son makes me stop and appreciate every milestone that I just took for granted with my daughters. They are so great with their brother, too, that is such a blessing. Life is what you make of it, don’t be afraid of the challenges ahead. You will be surprised what you are capable of!

Lawre nce February 18, 2009, 2:32 AM

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Hettie February 18, 2009, 8:38 AM

I know that this is a decision that lots of women have to wrestle with, but I think it’s really important that you’re making the decision based on facts and reality, not fear.
I’m here to say that it is totally not true “that would be no life for you or your child.” — that’s the one fallacy that you need to get past. People w/down syndrome, though as varied in ability levels as everyone else, for the most part lead full and productive lives. My son is 12, he goes to middle school, plays on the town basketball team, has a gang of friends, is dying for a girl friend, and bugs the crap out of his brother. Seriously, it’s a life, and an amazing one.
Also, he has added immeasurable to our lives, by making us dig deeper, to expand our view of what’s normal, to understand that ALL people are capable of so much more than we ever give them credit for.
I wish you luck in your pregnancy and I can guarantee that you WILL love this baby, quite fiercely, no matter how many chromosomes. Because it is YOUR baby.

Anonymous February 18, 2009, 10:26 AM

What kind of life would it be for you or the child? How about a life filled with love, caring, smiles, hugs, joy and more and more love. I feel sorry for the 90% of parents who terminate their DS babies because they are cheating themselves of one of the most amazing experiences and all of that joy. Why wouldn’t you want a baby with DS? My 3 year old with DS has brought our family (including 2 teenage “typically developing” girls) so much joy and love. She has made us better people and has taught us to appreciate the small things in life. When people ask what is the hardest part of raising a baby with DS, I can’t think of anything that is harder than raising a typical child… it’s just different - not harder! I pray that you can find peace in whatever decision you make.

Qadoshyah February 18, 2009, 1:16 PM

If you chose to terminate due to a diagnosis of Down syndrome, you will be missing out on a lot of love & joy! Children with Down syndrome bring so much unexplainable joy and love to their families. My brother has changed us FOR THE BETTER, since he was born. I wouldn’t change him for anything!

Qadoshyah

Laura February 18, 2009, 3:35 PM

The moment you hold YOUR BABY in your arms, you will not regret your decision to have him or her at all. Instead you will be overwhelmed with a different feeling - one which you have not EVER experienced before. Truly unconditional LOVE! There is nothing like it in the world - no matter what your child is like.

My opinion: I would NOT find out.
I didn’t and am so glad I didn’t!
I can’t imagine having that prenatal diagnosis and then spending the next however many months worrying about how things would be once he/she was here. I wasn’t ready to handle those things yet and didn’t need to be. I couldn’t have had the understanding or the resources I would need at that time and the answers come when you need them.

And how would you reconcile the fact that MANY prenatal diagnosies are actually faulty. (Not something the doctors are going to broadcast or really want to talk about, by the way.) They return a probability of Downs and then actually deliver a perfectly typical child. What if you aborted a healthy baby because you were afraid he or she might not be. I can’t even imagine!

Sounds to me like you have been given a gift and been blessed enough to carry it along this far. Why not rejoice in the gift rather than try to unwrap it prematurely!?

Sometimes it is much better to be “in the moment” of your LIFE. Not ahead of the game.
You are pregnant now! Enjoy it!! You don’t HAVE a child “with special needs” OR, for that matter, a “healthy” child yet. Forget about it.

By they way, turns out ours does have Downs. And we are a much richer family for it! In fact, if I COULD go back and change it, I WOULDN’T !!! It has been the best thing in the world for us! I know you can’t understand that now, but IF it “happens” to you, you will so know what I mean down the road.

And I’d be willing to bet that after having just this one child - healthy or unhealthy, typical or with Downs, cute or ugly, having a pleasant disposition or colicky… you won’t believe you even CONSIDERED the “option” of getting rid of it. He or she is your flesh and blood. You will be willing to fight for him or her with everything you’ve got.

Do that now too!



Laura February 18, 2009, 3:40 PM

(To continue my comment from before…It got cut off.)

You will be willing to fight for him or her with everything you’ve got.

Do that now too!

Cecilia February 18, 2009, 5:18 PM

DO NOT terminate the pregnancy. First of all, that’s a sanitized, euphemistic way of saying “having your child slaughtered.” Ugh, sounds terrible, right? IT IS. Your unborn child is a person worthy of the same rights as anyone else. Furthermore, he or she is your SON OR DAUGHTER. You could never regret having your baby - - but you could very well regret having an abortion (I’d argue that you WOULD if you were a decent person, and why subject yourself to such heartache?). Special-needs children usually turn out to be wonderful blessings for their parents. It’s challenging, but it’s also rewarding. Do you know what would be done if you had the pregnancy “terminated?” Here are the cold, hard facts. You’d probably have a “dilation & evacuation” because you’d be in the second trimester by then. The doctor would reach in with forceps and pull. Out comes a leg, out comes an arm…until all of the baby is out. Then the child is tossed in the garbage. Could you really live with yourself after having something like that done?

People with disabilities can live rich, full lives, especially today with all the therapy, special-education methods available, and increasing societal acceptance (I have a form of autism myself).

DON’T DO IT!!

Karen February 18, 2009, 6:08 PM

When I got pregnant at 35 after a menopause scare (skipped 4 periods for no good reason), my husband and I decided that because we knew we were going to keep the baby regardless, we wouldn’t do the amnio. My own personal paranoia point was Taye-Sachs, partly because friends of ours lost their newborn baby to something even more obscure. But there aren’t any serious genetic conditions in either family, so the worst thing would be Down syndrome. I’ve known a bunch of DS people, and almost all of them have been just a delight, so I knew I could handle it. The author’s position is really tough, because she did have two late miscarriages, so there might be a genetic problem that could cause fetal death, and in that case it might be better to terminate first; however, in her position I would probably take my vitamins, cross my fingers, and skip the amnio. Most genetic conditions carry only a percentage risk for each fetus; this could be the healthy one she’s been waiting for. And I hope it is!

Vickey February 18, 2009, 7:29 PM

I DON’T HAVE A CHILD WITH DOWN’S. I DID HAVE A SON WHO DIED OF SIDS. IF GOD WOULD HAVE GIVEN ME A CHOICE OF DOWN’S OR SIDS, I WOULD HAVE PICKED DOWN’S.

I KNOW PEOPLE WHO ARE PARENTS OF CHILDREN WITH DS. THE CHILDREN ARE ALWAYS GOOD NATURED AND HAPPY. SOMETIMES YOUR WORST NIGHTMARE CAN BE YOUR BEST BLESSING.

PERSONALLY, I WOULD NOT TAKE ANY KIND OF TEST. CHILDREN ARE GIFTS. WE DON’T DESERVE THEM JUST BECAUSE WE MAKE THEM. THEY ARE CHILDREN BECAUSE OF GOD. I WOULD NEVER THROW A GIFT OF GOD AWAY. ALL CHILDREN ARE PRECIOUS. JUST BE THANKFUL FOR ALL THAT YOU HAVE. AND DON’T WORRY ABOUT THE REST.

Cyndi February 18, 2009, 7:54 PM

My 2nd husband is the father of now-14-year-old daughter with Down syndrome. She functions on about a 5-year-old level and is the joy of his life. She is extremely well behaved and easy to care for. I also have 3 adult children from a previous marriage. My advice would be to take the test in order to be prepared, but I would hope after two miscarriages (I also had two) that you would be grateful to have a child and would not expect perfection. Even “normal” children have problems and character flaws; no one is perfect.

Roberta Dolman February 18, 2009, 8:16 PM

Mother Theresa of Calcutta said, “It is agreat poverty that a child must die so that you may live as you like.”I hope you respect your child’s life.

Roberta

Susan February 18, 2009, 8:52 PM

I am 40 and unexpectedly pregnant with my first child. I am also going to be a single mother. I have to say I always wanted to be a mom. Probably more than a wife which is why I guess I am not married. I had the screen test about two weeks ago and my odds went from 1/41 to 1/30 of having a child with DS. I had the CVS on Tuesday with my best friend there to hold my hand. Monday night I cried like no other. Today I am more peaceful. I have also worked with people with disabilities for almost 20 years. I am very scared. I am scared in general of raising a child alone, and adding DS or any other disability just increases my fear. I am also very aware of the services out there for people with disabilities. Some are great. But most residential service providers are terrible. I only know of two that I trust in my area. These providers either allow an adult to live independently in the community or provide help in the home part time. Again, I am very scared. I know many kids and aldults with DS, they are fantastic. Attractive, sweet, loving, funny, etc. But doing it alone is terrifying. After reading many of the comments I feel a lot better. I have also worked as a therapist with many typical kids/teens with behavior issues that are far worse than any child with a disability. Many of those kids have come from two parent, upper-middle class families. So parenting is no cake walk regardless of the circumstances.

Termination has never really been on my choice list. I am an adopted child and I always said I’d never abort. Although I have thought about it more during this. But I have come to the conclusion that the “what ifs” would drive me to an institution if I followed through. I was always so careful about birth control except this one time. And bam, here I am pregnant. I had started to mourn the idea of ever having a child of my own when I turned 39. I think of so many people I know who had had fertility issues and/or miscarriages and I just cannot believe I got pregnant the one and only time I do not use BC and at my age. But you did not ask for all that. I suggest you have the test. Anxiety producing yes, but I think I want to try to be as prepared as possible. Knowing that adoption is an option helps. I think after reading so many positive things about families with kids with DS I am more armed to handle it if that is the case. Thanks for writing and best of luck with whatever you decide.

Susan February 18, 2009, 9:03 PM

OPPS I guess I rambled on to much. To finish up, You did not aske for my life story. I suggest having the test so you can be as prepared as possible. Knowing that adoption is an option helps for me. But after hearing so many positive family stories makes me feel stronger and more a bit more able to let the fear go a bit. Best of luck with whatever choice you make-Susan

Maisey Yates February 18, 2009, 9:18 PM

First of all, it’s important to know that a test can most certainly supply you with a false positive.

Having a child with Downs would most certainly be a challenge, but every parent I know raising a child with this disability is in love with their son or daughter, and the children themselves are some of the sweetest I’ve ever seen.

And couldn’t adoption be a suitable option if the baby did have downs? I read in an above post that one woman regrets having her disabled child, and I think she should consider giving that baby up for adoption at this point. I think what she feels is certainly rare though. As a mother to two young boys I have to say I love them more than my own life and I could never regret having them, even though each child, whether ‘perfect’ (which I think is a poor description) or not, presents his own unique challenges. However, I think with a temination there would be regret. I can’t imagine, personally, having regret over a having a child and giving that child life.

When people speak of ‘quality of life’ I have to wonder what kind of quality your life has if you were never given the chance to live it.

K February 18, 2009, 9:22 PM

These doctors make you think that they are gods and their tests are always accurate. The truth is there are very high false positives w/ prenatal testing. How many “healthy” babies are terminated aka aborted b/c of these false positives.
Secondly, Are we living in some kind of Nazi era where only people who are considered “perfect” have the right to live? Who is perfect anyway? This is discrimination people! Don’t let it fool you.

carol February 18, 2009, 9:37 PM

do you realize that there is a three year waiting list for people wanting to adopt an infant with down syndrome?why even consider ending this precious life?we have adopted three children with downs and have never regreted it for one moment.no,they are not perfect,no child is,but they are happy and very much able to lead happy and productive lives.if you found you could not handle raising the child consider adoption and make a waiting family happy and give your child a chance at life.


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