Down Syndrome Scare?

I have a daughter, age 9, with down syndrome. She is the light of our lives. My advice is to connect with a group and get real information and not deal from fear. There are groups on Yahoo. The Emerald Family Down Syndrome Network is one.

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I dont, BUT I have a wonderful brother (5yrs) who has downs syndrom. They found it on an ultrasound (the "water" in the brain) and confirmed with an amniocentisis. The reason to confirm is because there may be things to watch for during pregnancy and different needs at birth (my parents werent going to not have him). No one WANTS a child with a disability. I cried when I heard the news, but since my brother has been born he has been the most wonderful boy! He is quiet, and loving. He is easily entertained and hardly ever cries (even if dad forgot to feed him). Although you cant know their intelligence levels, he is progressing beyond what his teachers thought he would, using phonetics to read even though he doesnt talk much. He has a very special spirit and is so important to our family. If you read up about Downs syndrome you will be intimidated, if you read about PEOPLE who happen to have it you will be inspired. They are amazing!
I know you dont want that kind of challenge, but I wanted you to know if you get it, it has its own unique blessings and rewards!

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Hmm, tough one. It sounds like they have gone beyond predicting a "chance" and specified some actual defects. Or could any of those clear up?

I was 40 during my pregnancy and chose only non-invasive tests--since my age was already a bit of a risk factor, I didn't see why I should increase the risk of miscarriage or infection by breaching the placenta with invasive tests. But for me, the non-invasive tests were very reassuring so I was satisfied, which you definitely aren't. You've got some real worries there.

I wasn't prepared to terminate if any tests came out scary, so I didn't see any point in having further testing done. But my mother said something reassuring--something that had never even occurred to me: "Honey, Downs kids are incredibly sweet, but if you don't feel up to parenting one, they are highly adoptable. Lots of people really enjoy parenting them." So there is still another option to consider...I was a bit horrified at the thought at first, and I don't think I could have done it, but clearly it works for many.

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Understand you are dealing with a person. You need to find some peace in this process so you are prepared to be a parent and advocate for your child. This is true for parents of "normal" children. Pray and get some peace inside of you. If you are planning to keep the baby, will an amnio tell you anything that is important to know? Will it change your plans? Sometimes so much information is thrown at you and really what you need to do is find some inner strength and peace. Parenting is always a huge and overwhelming job. I had a still born son 11 years ago and now have 3 daughters. I would not do a lot of diagnostics while I was pregnant with the girls because they just stressed me out and I was not going to terminate. In the end, I do not have my son, but I have my girls. We are very happy. While I have a hole somewhere, it's really helped to find the strength to move on and enjoy life with the children I do have left.

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It would be good if you have the amnio for piece of mind alone. If the Baby does have DS at birth you should have a pediatric cardiologist and a pediatrition with experience with DS. Many children with DS have cardiac issues. If you have the amnio you can research the docters yourself and be more prepared.
L.

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My husband and his ex were told the same thing. They went thru incredible stress for several weeks and decided to do the amnio. It came back negative. Weeks of horrible stress all for nothing. We decided to skip that test altogether with our 3 and God blessed us with all healthy ones. My OB did not really support our decision, but respected it. I am sorry you have to deal with this decision.

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i have a friend whoe was told with her 3or 4th (i forget) pregnancy that her child would have downes. she was so worried but i have met the litle girl and she is clearly a very intellegent and beautiful little girl. she now has 7 children and has never taken the test again because it was so wrong the first time. i hope the same is true for you

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We had the blood test come back positive for downs and I freaked out. It didn't "feel" right at all. Talking with friends and family about how much love and joy downs babies bringe into lives had me okay with the possibility, but I HAD to know. The stress was just too taxing. We had the amnio (quick and easy) and it came back negative. I have an incredibly smart 3 year old. If I had it to do over...I would not do the blood work test ever again!

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C.,
I actually know of two women who had the same "scare" you did and went on to have two healthy children each. Both women had their first child in their lates 30's. One decided to have the amnio to find out and the other did not. The friend who opted not to have the amnio said it was because she would not abort regardless and would raise the child anyway so she didn't see the point. As it turned out, they both fortunately had normal, healthy children.
Prayers and best wishes for you!

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A friend of mine was told the exact same thing last summer when she was pregnant with her 3rd baby. He came out perfectly healthy and normal! I hope that helps you hope!

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I have seen it go both ways. I know people who tested negative and had a downs baby, and people who tested positive and did not have a downs baby. Also, I have had an amnio, and although it was a bit scary at the time I ended up just fine and so did my baby. They thought my son might have downs too. So if you feel like you have to know, or it would change what you do, then get an amnio. If you can wait 3 more months to find out or it won't change your feeling/actions then just wait and see. But don't take the news as a sure thing. The only way to know is to have the genes tested or just to wait and see. Good luck.

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I was an over 40 mom. I decided that I wanted to know rather than wonder and worry throughout my pregnancy and delivery. I did the amnio. It was totally not a big deal...and I was so worried about it. We read all the info about all the risks and concerns people have, as well as weight the opinions of others which in all honesty don't matter one little bit. The problem with all of the information we get is that it is not necessarily filtered and we read A TON about what is risky, etc. We have less info on the flip-side. What matters is what you want as a mom to be. Once we did the procedure, I realized I had no reason to be worried. It was painless and the doc gave me confidence. It was not a very long process either - the longests part was waiting for the local anesthetic on my belly to numb me (maybe 20 mins). And the doc had the baby up on the monitor with ultrasound where he was watching its position and I could see as well. NO BIG DEAL. So, if you want to know, don't worry about doing the amnio. That's my two cents.

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No, I haven't had this experience, but I was an older Mom with Downs cousins, so this was a concern for me. I had the AFP tests and ultra sounds for all of my preganancies, and with my last child at age 38, I had an amnio. And I did that so I could be prepared, educated as much as possible for my child. Knowing what resources I needed to have in place, who would be the best pediatrician to deal with any concerns or challenges that this child would encounter. I also needed to be ready for all the inquiring minds of the well intended relatives. My advice would be to get the amnio. Don't wonder, if is a huge word. Know so you can be as prepared as possible. You have the diapers, the cradle, the crib, the changing table, the onesies, the books, the bathtub.... now you get the special things for this very special child. My cousins are awesome adults. They are self sufficient, intelligent, wonderful people. Their parents worked hard to make that happen. I wish you and your husband many wonderfilled moments, days and years. A baby is a vessel hope and dreams and your's will be no different.

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We know someone who was told their son would probably be downs. As it turned out he does not have downs. He has developed a little bit behind his peers (things like walking, talking, etc) but other than that he's a happy little guy. They think the slower development was due to the fluid on his brain while in utero. If you think you'll be stressed out for the remainder of your pregnancy, doing the amnio may ease your mind. I don't know if I'd do it either, but I also don't know how I'd feel being stressed about it for 4-5 months either, so I'd probably really consider which would be better for all of us. Best to you and whatever way it is, you will LOVE your little girl.

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I also had a positive downs test when I was four months, I ended up having the amnio, and I wish I hadn't. I had a perfectly healthy little girl in Oct. My ob/gyn's nurse told me that they were finding more and more positive tests when a woman was pregnant with a girl for some reason. I wouldn't worry about it.

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C.,
My 6 year old son has Down syndrome. When I was pregnant with him, my odds were 1 in 103 of having a baby with Down syndrome (per the AFP blood test.) MANY friends told me that their blood tests indicated higher risk for DS, and their babies were born without DS. I wanted definitive information so I chose to have the amnio. (I honestly knew in my heart that he had DS, before the amnio. I probably had the amnio so I could give my husband and family proof that the baby had DS.) After some thought and talks with husband and family, I knew (for me) the pain of termination would be far greater than the pain of having a child with DS. So even though I wasn't going to terminate, I wanted the answer that only the amnio could provide.

Down syndrome isn't scary. I remember bringing my baby home from the hospital thinking, "Wow, he's pretty 'normal.' I still feed him, bathe him, change him, dress him,love him. He cries and sleeps. He's got a fuzzy little head...just like a normal baby!" Well, obviously that's because he's more "normal" than not! He's a child, not a syndrome. He's still more alike other kids than different. Please educate yourself before making an irreversible decision. Of course, raising a child with DS is no walk in the park. But neither is raising my "syndromeless" kids! Each of my children is a gift. There is so much we would have missed by not having our son with DS as a member of our family.

Best wishes to you. No one sets out looking for "challenges," especially concerning pregnancies and babies. Sometimes we're just given gifts in disguise.

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Hi C.. When I was 4 months pregnant with my third child (I was 26) I was told that she may have Down Syndrome. She had a short septum, what they thought was a heart defect, and a partial blockage between her stomach and her small intestine. I chose to have the Amnio done, and the test came back negative for Down Syndrome. My baby will be 2 in June and she is a perfectly healthy little girl. All of the warning signs that suggested Downs corrected themselves before she was born. I chose the Amnio because I just couldn't stand the worry, and I wanted time to prepare and educate myself in case my baby did turn out to have Down Syndrome. Having the Amnio done lifted a huge weight off of my shoulders and relieved a lot of anxiety for me, but if you prefer not to have one done, I definitely suggest preparing yourself for a child that may have Down Syndrome (if you have not already) just in case. I wish the best to you and your family, and I hope all turns out well.

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Hello Miss C.,

My suggestion is that you go with your gutt feeling. If you feel that you can deal with the unknown and can just prepare yourself for the what-ifs, then wait it out. If not, go ahead and have the amnio done. It could stress you out more by NOT knowing than to find out either way and dealing with it!
While I was pregnant at 27, I was considered high risk for a few reasons and had weekly ultrasounds. They thought that by the bloodwork and u/s's that my daughter was going to either be born a little person or have downs because of the length of her femur (?) bones in her legs! I was never offered an amnio, knowing what I know now, I would've have demanded it! But all in all, I was blessed with a quirky and healthy 7lb baby.

I wish you nothing but the best.....

C., congrats on your pregnancy. I too have had a late stage pregnancy. My son is now 4 with some challenges to overcome. I was told during my 4th month of pregnancy that my son would probably have Down syndrome. I was told that most late stage (over the age of 40) pregnancy, the child risk of having some type of birth defict is higher. This was my 4th pregnancy and fifth child. I was already a high risk pregnancy. He was born with a hart mummer, double hernia,an undescended scrotum. We have been battling low/no weight gain, and problems with his feet and legs (known as pigeon feet). He is very smart, I call him my engineer. Give him Lego, tinker toys, Lincoln logs and will build all kinds of things, they even have working parts.
So, point is talk to your spouse and explore your feelings and how you both will feel now and in the future. No mater what condition your child inters this world, it will take all the love and patience that you both have to give this child what they need.
I wish you luck and my prayers

When I was a childbirth educator 4 couples in ONE of my classes were told FOR SURE they had downs babies. One had had amnio. The question I asked was would the get rid of the child if they did and all said NO. So, there was no need for amnio for the 3 that had not had it. ( you are right not to get it, one in 10 babies that has it likely dies from the proceedure)

In the end everyone of the babies was completely NORMAL and healthy. All of them had had lots of pressure from medical personele to abort the baby and from their family too. They were all really glad they had listened only to their own consciences. It really brought home for me how inaccurate medical tests can be and the worry that testing causes parents.

For my last 2 pregnancies I choose no tests other than a blood work up to be sure I was not anemic.

I wish you well and hope all goes well for you.

Hi C.,
My name is N. and I gave birth to a beautiful girl with Down Syndrome 28 months ago. I was 38 at the time. I chose, like you, not to have and amnio done due to the potential risks involved. I also did not have the Triple Screen blood test because it can give you false positives and I felt that it was not going to benefit me. So, I was counting on the 20 week ultrasound to give me any indication that my child was going to have any issues. I was told that they look for close to 100 different developmental abnormalities to determine Down Syndrome alone. My daughter, Alivia, did not display any signs, so it was a real surprise when she was born and had DS. To be honest, based on your test results and your baby having VSD (Alivia was born with an Atrial Septal Defect), I would encourage you to be prepared for having a child with Down Syndrome, as much as you can. I know this is not an easy place to be in and I understand your fear. For me, it was fear of untread ground, and not feeling competant to raise a child with special needs, but let me tell you, the resources and support available, if this is the case, is amazing. I consider my daughter having Down's to be an incredible blessing straight from heaven. She has taught me more about life than I will ever teach her. I wish you and your family the best, C.. You will be in my thoughts and prayers.

Hi C.,

One of my dearest friends went through all the testing and was told she was having a Down's Syndrome Child. Her son was born totally normal. He is now 13, very smart and a great athlete.

Let yourself focus on how much you love and want this baby. See the child as whole and healthy. I will keep you and this precious baby in my prayers.

K.

C.

A friend of my was told the same thing. So they had an Amnio done and things turned out OK go them. They a baby girl that is 10yrs old now. So you can't always go by what they say.
I also worked in a day care and I took care of a little girl with downs. I loved her so much. She was so easy to take care of . If you have a downs baby you will love that little so much and you will see things through their eyes and love it. I had a really hard time when she was moved to the next room. She is in her 20's. You will do great.

Hi C.,

I'm a little late in responding. I'm not sure why you wouldn't have the amnio. If you're afraid of the risks or needles or whatever it is, I want to assure you that it is no big deal. I had one with my first child and had a CVS just last week (a different test to check for downs, but the same procudure.) It's so easy and very little pain. I hate needles and want to throw up every time I get a blood test, but that really was easy.

If you have other reasons not related to pain or fear, then that info was useless. I just want to make sure you consider it and not let those things get in the way of any reassurance you may need the next few months.

I wish you luck.

Hi C.,

Congratulations on your pregnancy and impending parenthood! If I were in your shoes, I would forgo the invasive test and prepare myself to have a baby effected by Downs Syndrome.

You, however are not me. Do what your Mom instincts are telling you is best for you and your child. You really can't go wrong.

If you feel having the answers to your questions will allow you to relax for the remainder of your pregnancy, this can only benefit you and your baby. The amnio is low-risk, especially at this late stage of your pregnancy, but if you decide not to have the test, your baby won't suffer for it. The presence of VSD already necessitates a specialized pediatrician be involved at birth.

So, pray for wisdom and strength, and make the decision that feels right for you and your family.

Remember: In the event that your baby is effected by Downs Syndrome, after grieving the loss of the child in your mind's eye when the stick turned blue, you will fall hopelessly in love with the child in your arms.

Sending love your way,
D. T

I'm afraid other people's experience is only marginally helpful, as it won't change the fact of who your baby is. However, I did work with clients (as a student midwife) who had a similar situation (no blood test, though), got the amnio and the baby did not have Down's. Another couple had a screen positive blood test, no amnio, happy healthy baby.

If it helps, VSD is one of the most common heart defects, often not associated with Down's. Also, there is usually a scale of 'positive' on the blood test -- is that where the 50/50 came from?

I'm curious about the hesitation to do an amnio. The risk is quite small (especially with an experienced doctor), but I'm know any risk can be too much to agree to.

Good luck!

--K.

Why not have an amnio? I don't understand why you wouldn't, especially given these concerns.

Take care,
S

My mother was 43 and the something similiar happened. Doctor's told her that she was too old and it was too stressful of a pregnancy. In addition, they told her that it WAS a down's baby. At first she struggled with this, and then gave it to God. Whatever happened - - this baby was a gift. Well, a beautiful baby girl was born and she was perfect in every way. No down's syndrome whatsoever. I was expecting at the same time as my mother, and my own daughter was born three weeks later. Some things we have no control over in this life. Trust in God. Congrats on your first baby!

Always realize that technologie is both good and bad. Take each moment for what they are worth until you need to truly worry about what is next.

Hi Cristel,
If God choses to give you a down's baby, then you will be truely blessed. There is not a more loving child brought on to this earth. I have been blessed with a little boy with down's. He has taught the whole family love, compassion, patience and understanding. He has truly been a gift!!! I cannot imagion life without him. He has six older brothers and sisters and he has brought them all together. He has definately gave so much more to this family than he has ever taken. Yes, there will be challenges but remember that everyday is a challenge to them yet they always face it with a smile and a positive attitude. Nicholas is now almost 8 and is basically a typical little boy he does everything his peers do and has a great circle of friends. If you find that your little girl has downs just remember that she is not handicapped unless you make her that way. If you have any questions or would like to talk more please feel free to contact me. Thanks, C.

C.,
I was told I had a one in 40 chance of my baby having Down Syndrome. I was told this based on a blood test and ultrasound. I chose to have a amnio done because I couldn't stop thinking about it... I became obsessed! Even though I knew those screening test are often misleading, I felt I needed to have the information to process before the birth. Turns out my daughter was/is completely fine. But I'm glad I did the amnio anyway because I was able to relax and not worry about the what- ifs for the duration of my pregnancy. I would have kept the baby if the tests were positive for down syndrome but would have used the rest of the pregnancy to become as emotionally and intellectually prepared as possible. That was my experience. Ofcourse you will do what is right for you! Warm wishes to you, your husband and your baby girl.

Why not do the amnio? I know that the idea is scary but the worst part of the amnio is the anxiety leading up to the procedure. I have had blood drawn that hurt a whole lot more than an amnio ever did. I am the biggest baby when it comes to needles. I have had 4 amnio's and would gladly have another to know if my baby was healthy or not. The few minutes it takes to do an amnio out weighs the worry of a few months of not knowing what to expect or prepare for with this baby. Good luck and my prayers are with you.

I will pray for you and your sweet little one, and I hope that other moms in this forum will join in praying.

Hi - I understand that you may be scared to have an amnio done. I was with my first child. But why would you not have the test done that could tell you for sure??? It did not hurt me in any way...there is only a tiny chance of anything happening....Please, get the amnio done so that you know for sure.

C.,

I don't know about the test, but I had a friend that was told she was going to have a child with Down syndrome and she should abort and had a perfectly typical child.

If I were you, I would research what you can about Down syndrome and so just in case you are prepared. I have connections with support groups you can talk to if you need info.

The best thing you can do is relax and pray that your baby is healthy and you are going to have a clam birth.

Take Care,
G.

Hi There,

I can't help you with having testing done and then giving birth to a baby without DS but I do know the tests are NOT 100% conclusive either way. I am the mom of a child w/ DS and if it should turn out that your baby DOES have DS, I can tell you that there is a whole network of folks here in Tacoma (not to mention all over the state) who will be right by your side through the whole journey if you want. We can be there for you through all the "what if's" and "how can this possibly be happening to me?" scenarios. I can also tell you that no matter what, your baby is precious and NOT a mistake!! Whether he's typical or has an extra chromosome he has a special purpose here on earth!
I'm here for you if you want to connect! G.

I have had two friends that have had been told the same thing, all turned out.
On that note though, God gives us gifts, and a gift is a child, I think a down syndrome child is a great gift from God. Think about them, I have never seen one that didn't make me happy.
I wish you the best, and pray that all turns out the way God wants it.....
Best to you and your family.

no actual experience with this, but remember there's at least a 50% chance your child does NOT have Down's syndrome. And I assume there's nothing different you would do even if you knew, so it sounds smart do not do the amniocentesis (which is risky and potentially harmful to the baby in itself). I think these tests are really unfortunate in that they can make people worry unnecessarily when there's nothing wrong, and excessive worrying can definitely affect the baby. I would say just love your baby, talk to him/her, reassure him/her of your love, and do your best to be calm and relaxed.

I my girlfriend having this same scare. Erik her son was PERFECT. You will love that baby of yours no matter what! It is the most wonderful experience EVER!!!

I haven't experienced this, but I had a question for you. Why do you not want an amnio?

C.--
your "scare" is legit. i can't tell you that when you get info from the doc like that to not worry. it is in our nature as moms. however, i can also tell you a couple things from my life that have really helped me and other ladies i have counseled.

1)it is possible to know too much! what i mean is-- we have tests for everything these days--esepcially in the medical field. then these percentages are spit out at you and if you are like a lot of women, you read up on the subject and scare yourself about all the possibilities that could happen. even the most highly recommended book for new moms(what to expect when you're expecting)can leave you feeling very overwhelmed. because of this, we forget that 50/50 can also mean there is 50%chance that everything will be "normal" as well. and as it turns out, this is the case a lot of the time!

2) the above being said...let me offer you another perspective: IF your daughter is born with downs syndrome... it can be a very positive experience. being a special-ed teacher my whole adult life, i have found downs kids to be the very sweetest kids in the whole world! in fact, that is one of their traits is to be affectionate. i'm not saying they don't come with a set of challenges...but parenting in general is challenging. downs kids are just challenging in a unique way. that is fact. now let me offer you my opinion... i think God requires very special parents to care for and raise special needs kids, and that He is particularly picky about whom he chooses to award that responsibility. what a comforting and honorable position to know that God trusts you enough to take care of his very precious creations!

C.--if you'd like to chat more about this, i am completely available. you can email me off the mamasource format if you'd like at ____@____.com.