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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
Anonymous February 17, 2009, 7:43 AM

having a boy with downs is the best “gift” i have received and i was not in my late 30’s. but you will love your baby no matter what. you may not have a downs baby but if you did you will love him/her even more

ashley February 17, 2009, 8:00 AM

Wow!! I don’t know. When I first read the title I thought, well of course, terminate! But as I read I changed my mind. After 2 miscarriages that would be a hard decision to make. I would probably do the test. What kind of a life would you or your child have if the child had down syndrome? I don’t know, I hope you can pray to God for help on this one. I hope everything works out for you.

Dyanne February 17, 2009, 8:47 AM

I had my first baby at 27. A boy with Down Syndrome. I went on to have 2 other “regular” children and am now trying to adopt a child with Downs. There is no getting around it, It has its challenges but so does parenting in general. What I can tell you is they tend to be “perfect people” No jealousy, No greed, No hatred, Just love, pride and more love. Every morning they wake up and continue their day and make us and everyone around them better for simply being in their life.

susan February 17, 2009, 8:51 AM

i can shed some light on this for you….if you have had two miscarriages and question whether you would abort a child with down syndrome, you have a lot of work to do. a son or daughter is a gift, without regard to diabilities. we had our taylor, who has down syndrome, six years ago and what fools we would have been not to have shared our lives with this little guy. we did not know, however, i would never have aborted..at any rate the gifts of joy and laughter he has contributed to our family have been priceless. scared at first, we discovered he was like any other child. just a bit slow! he is extremely handsome and his smile and laughter light up a room. he doesn’t know a stranger and loves every aspect of life. he has opened my eyes to new found ways to enjoy everything around us and please, think long and hard…..this is not a life sentence….it is a life experience, and a positive one..at that.

chris February 17, 2009, 8:57 AM

My 2nd child was born with a birth defect and the truth of the matter is that even though it was hard - very hard- at first, she is the best thing in my life. I’m glad I didn’t find out while I was pregant because I know it would have taken the joy of the pregancy from me and made me too stressed. All children are gifts. When you have a child born w/birth defects the first thing you need to do is mourne the death of the concept of a “perfect” baby and then love your baby as they are. I wish you the best and hope that everything works out for you.

Mary February 17, 2009, 8:59 AM

Since our daughter was born 24 years ago, I have been asked repeatedly over the years to meet with new parents of infants with Down’s.

Increasingly, I have heard new mothers tell me “I deserved a perfect baby”.

I think the fault lies with OB-GYNs who - hypocritically - exaggerate the debilitating effects of disabilities that can be diagnosed in utero (and the pregnancy terminated) like Down’s and spina bifida.

Over the past 24 years I have met not only dozens and dozens of people with Down Syndrome, but dozens and dozens of people with all sorts of disabilities (including those which cannot be diagnosed before the baby is born and which are far more debilitating than Down’s - cerebral palsy and autism for example).

I am an atheist so I’ll leave “God’s will” out of the mix. I think you need to decide if you love this child unconditionally or if you only love this child if it will be “perfect”. If the latter, you should terminate - you’ll make the poor kid’s life miserable.

Our daughter has too many chromosomes (to quote the joke Down Syndrome parent bumper sticker: “my kid has more chromosomes than your kid!”) and yet she is perfect in our eyes.

She was mainstreamed throughout school and works as a kindergarten teacher. She’s a worthwhile member of the community, loved not only by her parents, but her friends and her colleagues and her pupils. Her life is worth living.


M February 17, 2009, 9:12 AM

I recently became a mom for the first time in my late thirties. While we eagerly anticipated our first child, we did have in the back of our mind “what if he/she has Down’s Syndrome?”. I can’t deny that it was a daunting thought. I didn’t have an amnio as we had decided that no matter what problems our child might have we would not end the pregnancy - that child was part of me and part of my husband. For us it would have been as if we were denying a part of ourselves.

If your child does have special needs, there are support groups so you wouldn’t feel so alone. I sat next to a woman once on a plane who was going to a convention for Down’s Syndrome parents - she showed me a picture of her son and was very positive about having a child with that particular condition. Wishing you all the best.

Kristy February 17, 2009, 9:30 AM

Being a parent is a challenge no matter who your child is. The moment your baby is born you are instantly transformed into a person you did not know existed. Your motherly instincts immediately kick in and you want to protect your child from all the heartache, all the wrong-doing, and any one who will hurt their feelings in any way. You find yourself immediately responsible for another human being and no matter who your child is, it is a challenge.

Parenting a child, regardless if they have Down syndrome or not, will not always be easy. All children get sick and require medicine and late nights of worry. All children get injured and require stitches, and casts and rushes to the hospital. All children require extra help in some subject in school that they are struggling with. All children have temper tantrums at least once in the middle of the grocery store. All children have heartaches from lost loves and lost friendships. All children, will raise their voice to you at least once, but more likely hundreds of times in rebellion of what they deem unfair.

All children will melt your heart with that first smile in recognition that you are their mom. All children will bring tears to your eyes when they learn to say “I love you”. All children will make you proud when they read their first words and bring home their first report card. All children will bring you joy that you had no idea was possible.

All children, regardless if they have Down syndrome or not, are just children. Yes, having Down syndrome is different than not having Down syndrome. You find yourself at a few more appointments with doctors and therapists who will help your baby walk and talk. Yes, they do sometimes struggle in school just a bit more than others and you learn how to teach them in a way that will work for them. Yes, you do find yourself sometimes wishing that your child didn’t have these extra chromosomes that made them just a little different than everyone else. But the main reason why you wish that is not because you hate that they have Down syndrome, it is because you hate that others don’t understand what a joy it is to have your child.

I am a parent of 5 sons. Each have given me their fair share of late night sicknesses, rushes to the hospital,temper tantrums, and rebellious backtalk. They also have each given me a joy that I never knew existed within me. Each have had trouble in at least one subject in school and I have held each one when they cried over lost loves and friendships.

My middle son has a rare form of Down syndrome called mosaic Down syndrome. He has not been any more of a struggle than the other boys have been. Yes, there have been times that have been challenging, but with each of them have brought challenges.

No matter if your baby has Down syndrome or not, you will love him/her and that baby will bring you love and joy that is beyond your imagination. I hope, no matter what, you don’t miss out on this wonderful opportunity to be a parent!

I wish you and your baby the very best!

Natalie February 17, 2009, 9:52 AM

My Beautiful Chelsea was diagnosed with down syndrome, she is 18 yrs old. I say “diagnosed with” because she is not down syndrome itself, simply diagnosed with it. She is so much more than that. What love she gives freely to anyone in her presence. What joy she brings the world. I cannot imagine my life without her and I am heartbroken that I could lose her before I die as I would be with my other child. I have given her what I have to give as a mother, human being, friend and confidant. She is a thriving member of society and I personally am so glad to have had the honor to be her mother.

ame i. February 17, 2009, 10:18 AM

No one is going to like my opinion.
I have 2 healthy children. Even healthy children come with their fair share of worry and fear that something may happen to them.
I would terminate a pregnancy if it were determined to be a special needs child. I’ve seen children in other families having to take a back burner to a special needs sibling. I do not think it would be fair to my 2 children, my husband, or me to have that added stress.
I am not critisising special needs children or their parents, I just know it would not be the right thing to do for my family.

ame i. February 17, 2009, 10:29 AM

I have 2 healthy children. I would terminate a pregnancy if it was determined to be a special needs baby. I don’t think it would be fair to my children, my husband, or to me to have to deal with the added stress. A healthy newborn can be a big adjustment.

jackie February 17, 2009, 11:28 AM

omg..i don’t know…

that is so hard.

i would say do the test so you know.

Tami February 17, 2009, 11:40 AM

I am a mom of 7 children ranging in age from 18 down to 5 months. Our last child was born with Down Syndrome and I will not lie and say it hasn’t been tough, but it has also brought amazing changes in our family. Our son was great for the first 6 weeks of life, we did not mourn, rather felt very blessed, he seemed to be quite healthy and very happy. He went into ICU at that point and came home a month later with a trach that will be there indefinitely. We have had more stress over the medical scare than the Down Syndrome issue. Has it changed our lifestyle? Absolutely, as does every child. But we have been stretched and pushed and grown immensely as a family. My husband is a blue collar self-employed man who is now confidently qualified to care for our medically needy child. I have an 11 year old who can take care of him almost as well as us and a 5 year old who offers to hold him for me, and a 2 year old who wants to help feed him all the time. He is the most joyful of all my babies and always will be, and I have no doubts that he will always be the light in our family. He was the catalyst that healed a broken relationship in our extended family, he was the one thing that softened the heart of our wayward teenage son, who wants to be there now to show him a positive role model. We are immensely proud of our beautiful Down Syndrome child who doesn’t know a stranger and has a smile for every person who talks to him. He has charmed everyone who meets him and is delightful! We are better people and parents now that we have him and wouldn’t change a thing! Neither would you once you held your child!

Cheyan February 17, 2009, 11:48 AM

I say don’t do the test.You should be grateful that you are pregnant and can carry the child to term even if the child does have disabilities.You will love it no matter what.

OKwithit February 17, 2009, 12:10 PM

We had a child with Down syndrome after two “typically-developing” children. Each provides their own challenges and charms. Nearly daily, we see what each of our children does to help each other and others. Without a doubt, doctors are largely, and in most cases erroneously, responsible for presenting a disorder in a negative light. If a doctor told parents every possible thing that “could” ever go wrong with a “typically-developing” child, parents might also think twice about giving birth to them. If you are concerned about having a child with Down syndrome, spend time with many of them, talk to their parents—just like you have observed the “perfect” children you crave, become familiar with the ones you are afraid of. I assure you, the parents of these so-called perfect children will tell you that none of them is perfect. You cannot possibly know what if would be like to have a disabled child until you have one. Just like you cannot experience having a child at all without having had one. Why deprive yourself of the experience? Life is in the experience. Allow yourself to live it. It doesn’t have to be perfect to be rewarding. I can guarantee that each of my “typically-developing” children is a better, more compassionate, giving human being for having had a sibling with a disability. They are her toughest critic and biggest cheerleaders—just like they are with each other. I know many families who have children with disabilities. I have never heard anyone say they wish their child had never been born—it is overwhelmingly and unanimously otherwise.

Meg February 17, 2009, 12:18 PM

My parents adopted my brother (who has Down Syndrome) when he was an infant and I am so thankful for that everyday. A child with Downs brings such blessings that you can’t even imagine. My brother is so loving and caring of everyone. He’s 28 today and my kids LOVE him to death. He comes over to see them all the time and my son whose 4 and daughter who is 2 ask about him all the time. He’s very, very protective of my children. Yes, it can be hard at times to raise a child with Down Syndrome but it’s also hard (for different reasons) to raise a child that doesn’t have Down Syndrome.

anonymous February 17, 2009, 12:26 PM

When I read the title and caption of this story I thought Why is MomLogic using a photo of a very pregnant woman to discuss abortion. Then I read the story. For me this is would not be a tough decision. I would have the test so I could be prepared but I would not terminate my pregnancy. While I respect the decision of women to terminate their pregnancies no matter what their personal reasons are, for me life begins at conception. Immediately after conception the cells begin to divide. By 4 weeks your babies organs are being developed and some even start to function, by 6 weeks the brain, lungs, nose mouth, ears and much more are developing. To me all this development and growth means life so I would not terminate. Instead I would take the next few months to educate myself about having a child with a disability. I know that my family would have to adapt but just because a child may have extra needs doesn’t mean that it should be denied the right to live. What would you do if you had a healthy child that was involved in an accident and he/she wound up with brain damage? Would you be able to handle it? Would you do everything you could to help your child have the best life possible? Of course you would. Would you wish your child had not survived the accident? I don’t think anyone would wish that… This child growing inside you is no different and deserves the right to live just as much as a child that has already been born. At 37 years you should have known that you would be entering into a high risk pregnancy and that there was a risk of down syndrome as well as many other risks to yourself and the child. This is something you should have considered BEFORE getting pregnant. Furthermore, you should have consider how you would handle a child with a severe illness or brain injury. If you can’t handle that then maybe you should reconsider having children altogether. I’m not saying that you should not question these things I’m just saying that your timing is off. If you decide that you can deal with these types of situations then have your baby and keep your friends & family close. Even parents with children that don’t have a disability need support and help from time to time. And if you decide that you want even more children you may want to consider adoption, so as to avoid a high risk pregnancy.

Anonymous February 17, 2009, 1:08 PM

I have a 10 month old with a disability that was not diagnosed in utero. These last 10 months have been the most stressful and difficult of my life. I had to stop working. There is strain on my marriage, and I feel like I am neglecting my other children in order to focus on the disabled child. There is very little time for me to take care of myself. If I had known, I would have terminated the pregnancy. But i am also fortunate enough to have two other “perfect” children. Maybe if I only had the one disabled child, I would feel differently. I say take the test. That way you can at least be prepared.

Beenthere February 17, 2009, 1:25 PM

At 44, I unexpectedly became pregnant. I refused testing because I didn’t want to be tempted to abort should there be a problem. I had many ultrasounds looking for DS, as it was my greatest fear. Nothing showed. However, when my daughter was born she had Downs. I have a girlfriend who adores her DS baby boy, but as hard as I tried, I couldn’t cope. I finally placed her for adoption at 6 months old. Her parents are special ed teachers and are a gift from God. We have remained close and my birth daughter is now 4. The DS isn’t scary anymore. She’s funny, learns quickly, and is a joy. Do I have regrets over the adoption? None. She’s right where she belongs. There are alternatives to terminating pregnancy that are win/win for everyone.


Jen February 17, 2009, 1:42 PM

I can respect the need to way the challenges with ones own abilities before taking on any child. Some of these posts have concerned me though, when mothers of non-disabled children have refered to them as perfect. Kids are hard, and imperfect no matter how they come. I am a mother of 6. It changes daily who is the hard one. They all have weaknesses and challenges. My job is to love them and nurture them and help them overcome as I am overcoming my own imperfections. Choosing to have a child is a gamble. I believe that a lot of mothers find motherfood difficult because they had an expectation that the child would fulfill something for them. Remember that as you suffer through infertility and miscarriages in search have that “perfect” child, you are setting a tough standard to live up to for any human being. In my own children it is their imperfections I have grown so fond of.


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