Need Advice on Down's Sydrome Screening

I was 36 when I had my son. My numbers were elevated but even the slightest risk to my son of losing him was more than I was willing to risk. Instead I had level III ultrasound done by a perinatologist which is specifically looking for evidence of anomalies or other problems. There is no risk to the fetus at all.

Hi S.,

Why do doctors like to scare us? You would think if the baby has a 98.7% chance of NOT having downs, than the test should'nt even be brought up. However, if you think there is a chance you won't keep the baby because he has downs than you might want to have the test, so you can prepare for adoption. It's not fair to the baby for you to decide if he should or should not live, especially when he is far enough along to survive if he was born today.

Forget figuring up how old you will be when your kids are certain ages. That doesn't matter. I think you are starting to stress yourself out with your mind going haywire. My husband was 52 when our son was born and he's a great father, and we're not done having kids. Yes our kids are going to have older parents than most of their freinds, but that doesn't mean that we are going to be old and fragile, we'll just be more wise!:) Aren't we always hearing nowdays that 50 is the new 30? You are only as old as you act! Your kids will probably thank you for having them when you were older (by the way 37 is not old!!!) because you were more mature and can be a better parent. So, stop stressing yourself out and enjoy the last few weeks of being pregnant, especially if this is your last pregnancy.

Good luck and let us know what happened! And remember: 50 is the new 30!!! :)

S. - You have a lot to consider and it sounds like you are a loving and caring mother. Anyone who would judge you for the thoughts you are going through is being insensitive. It's much easier to determine what's "right" when you are not actually living the situation.

I completely understand your concern about your other children. I have four kids of my own and last year, my niece came to stay with us for the summer, and after a few weeks she asked if she could live with us. Her family situation was really bad and she had been living with her grandma and was very unhappy there. I knew that living with us would be the best thing for her, but I had to consider my four other children, whom I already felt I did not get enough time with. We went through some horrble times, as one of my daughters openly rejected her cousin and was hateful. A year later, things have settled down and things are pretty much ok. All that is to say it is really hard to bring someone new into your family, especially if that person is different and has a set of needs that is separate from everyone else's.

As for your concern with Down's Syndrome, I would get the test and then you will know for sure. You will either ease your mind, or know exactly what you are dealing with. Otherwise, you are going to drive yourself crazy with worry until you give birth. I would trust the doctor that what happened last time was rare and should not happen again.

I would not tell you that having a Down's Syndrome child will be easy. It won't. However, I have known two DS children in my life, and both were absolutely deightful children and a blessing to their families. One of them was the youngest in a family of four, and the other was the oldest of two. Both had loving families who spent a lot time with them, and they were quite social and loved by all who knew them.

So, as you are considering the burdon this child could bring to your family, also consider the blessings. Your children will love this child whether he/she is normal or DS or any other problem. Your DS child will teach your children that people who are different are people too and will have that outlook as they grow into adulthood. Your DS child will teach them patience and compassion in a way that most people never learn. Your DS child could inspire one one of your other kids to become a doctor or a special education teacher. There is just no way to know all the good that could come of having a DS child, nor all the bad. But just know, it won't all be bad. There will be plenty of good.

In the end, this is a decision for you and your husband to make in the best interest of your expected baby and your other children. If you follow your heart and make the decision out of love, you will have chosen the right thing to do.

First of all congratulations!! I remember when I found out that I was pregnant and I went for my amino test. I didn't want it but had it done anyways. The results of mine came back that my baby girl would be DS. Ok no big deal. I was able to get doctors lined up before the birth because we knew she did have a heart defect. I met all the doctors months in advance and they informed me of what was wrong with her heart and what they could do after she was born. I was also able to get prepared for her to start PT, OT and DT as soon as she was able to start after her birth. Zephany was born on her due date 06-06-06!! She was just perfect. Since then her heart has been repaired. She's not taking meds, she's been walking since 15 months, she's everything the doctors told me she wouldn't be. They told me to expect a baby that was floppy like a rag doll, her tongue would protrude out of her mouth, low muscle tone, she wouldn't walk until after 24 months and the list went on and on. She is NOT like that at all. All of her therapists even question the diagnosis of DS. We are going to have her retested to see if she in fact might have Mosaic Down syndrome.

I also have other children. Their ages are 20, 19 and 5 years old. My 2 older children know in time they will probably have to help out but they just love their little sister so much and they want to help. To top it off, my 5 year old has a very rare chromosome abnormality too. When I had amino with her, the doctors never had seen this before and told me my options. #1 was to abort, #2 was adoption and the last option they told me was #3 to keep the child. They told me that she would probably never walk, talk and she would be severely handicapped. I walked out and never went back. My daughter is walking and she is trying to talk but does use sign language to communicate along with her computer that talks for her. She just finished Kindergarten and was FULLY included in her classroom and was doing the same work all the kids did.

Both of my girls are special with or without their extra chromosomes. I would not be complete without them in my lives and I came close to not having my youngest because I was very high risk after losing 4 babies. Yes sometimes it's hard but the good outweighs the bad. I love all my kids equally and no one feels left out, not even my granddaughter that is turning 1 next month. I am an older mom too. When my youngest was born I was 44.

Down syndrome isn't a death sentence to you or your family. My girls have also been an inspiration to others that are feeling sorry for themselves because of a medical problem.

If you feel you can't raise a child with DS, adoption is something you should consider. There are many families out there wanting to adopt a child with DS. I know I would love to adopt another child with special needs.

If you want to talk to me more, just email me and I can give you my phone number. I'm not sure where you are located, but I would like to meet you and introduce you to my daughters too.

Get the testing done if and only if you want to. It is a risk to the baby. I do know that doctors always tell you the worst things and I can tell you the best things about having a child with DS. They are also predicting one day that DS will become extinct because everyone is aborting. I also know that your test could be wrong and your child might be born without DS. DS isn't the end of the world or your family life either.

One thing I didn't mention yet, I grew up with a sister that has the same rare chromosome abnormality that my daughter has. I never felt left out, we did everything that other families did. I never regretting my sister and I'm proud that God chose me to be the mother of 2 of his special children. He trusted me to raise them to the best of my abilities. I thank God everyday for my children.

Let me know if I can help in anyway. Let us know how things are going with you and the baby.

Take care
J.

S.,
I had the same thing happen with my daughter. We had the level 2 sonogram and decided not to have an amnio because the results were promising and the result would not have changed our decision to keep the baby. Have you had a level 2 sonogram? If not I would ask to do that before having the amnio, you might decide it isn't necessary.
On another note. Please don't let anyone tell you how you should handle your pregnancy if your results are not what you are hoping for. You need to make your decision based on what is best for you and your family, not what other people think. It is a very personal decision and one that you can only make for yourself!

I have 3 kids and I had them at 33 (almost 34), 35, and 36. I am one of those people that like to be prepared for things. I want to know the sex of the child so the nusery is ready. I wanted to know if there was something wrong so I would be ready that day they were born. I think it is such an emotional day anyway I think there is something said to being prepared for what is coming. Now I did the Quad test and the level 2 sonograms but they came back with such a low chance for Down's that we didn't do the Amnio but if they had been high we would have done for the simple reason like I said I want to be prepared. For whatever reason you need to know I don't think anyone can fault you for that. Sorry you are going thru this I can imagine it is an emotional rollercoaster especially having pregnancy hormones on top of it.

M.

I understand your concerns about a special needs child affecting family and children. I can not have children, so we've adopted, and are in the process of adopting more. There was a situation last month where we were selected for a sibling group of 5 children. The infant most likely had downs. We made the decision that I ultimately would not be able to handle it with all of the other special needs children we would potentially have. My social worker mentioned that she has a family on her case load that has adopted two downs syndrome children and are wanting more! I thought that was so special that they were so willing to do that. So, if you decide your family can't handle it if it turns out to be downs syndrome, there are families out there that would adopt your little one...and I could pass on your info to the couple I just spoke about if you wanted.
Also, when he/she is born, you may completely change your mind. There are resources available for families with special needs children. You wouldn't do it on your own.
Pray about it. It's scary because you want to make the right choice. I'll pray for you too and ask the Lord to lead you in the right direction.
C.

As for the results of your test, that is a very personal decision. Having said that, let me give you a little bit of advice from not only my experience but my parents. I am #4 of 5. My little brother is 11 years young then me and he has been such a blessing to our whole family. He is now 18 and my parents are in their late 50's and early 60's. My mother has said so many times how good it has been for them to have him around. She says that he keeps them young. I noticed that your boys are only 4. That really is not very far apart at all. Some people plan it that way. One other word of advice, kids, especially young kids, will adapt fairly easily. While a child with Down's does require lots more attention, so would any other baby in the beginning and your children will learn as you do how to take care of this child and they will love the child as much as they do eachother. Think positive and whatever the results, it will work out ok.

I have a younger brother with Downs syndrome. He is probably the kindest, most eager to help, willing to do anything that is asked of him person I know. My parents are in thier mid 60s he turned 31 yesterday. He is really close with my brother. My parents have made provisions in thier wills that the house will be in his name so he will have someplace to live when they die. They also have a trust fund to cover the cost of the housing. He has worked at Bob Evans since he was 18. He loves his job, most days, and really likes the paycheck so he can get the things he needs. There are also places like community living where special needs people can live in a group setting and have normal lives. All people need unconditional love regardless of any labels that they might carry. If you plan on giving this child unconditional love no matter what then why take the risk? Just pray on it, if you pray, I will pray for your situation. God Bless.

Hi S.! I am also 37 and expecting my 4th child. I myself have decided to forgo all the testing because I've known too many people who have had false negatives and worried for nothing. The more I read up on it, the more risks there (I feel at least) are with actually doing the testing than not. This includes going into early labor, having a miscarriage, etc. It also freaks me out. So, I really do feel for you. The number of false positives is also much higher than an actual positive result. I guess I just feel to let everything go as nature planned and rely on that. Maybe that's not the answer you are looking for, but I hope you just don't stress out too much about it. That can actually make matters worse. Try to relax if you can and best of luck with your decision. :-)

Those tests have a terrible false positive history. The risks associated with an amnio are NOT worth the questionable results. Just enjoy your pregnancy and look forward to meeting your baby! Think about how in love you felt each time you held your children for the first time. You will feel that way about this baby, too!

S.,

It's hard knowing that you are at risk for something like this. It's scary to think about the unknown, isn't it? But don't short-change yourself or your kids by assuming that you or they couldn't handle the possibilities.

I'm sorry to be blunt, but I don't know how else to put this: what does "fair" have to do with it? It's not about doing what's fair, it's about doing what's RIGHT.

You are already knowingly changing your other children's lives by giving them another sibling. Also, there are plenty of adults with Down's who are living on their own, supporting themselves just fine. You cannot know whether this child would be a "burden" to his/her siblings or not--with or without Down's Syndrome. (We all know of someone who is "normal," but is still a burden to their family!)

1.3% is a very low risk, and you're also worried that the amnio will cause other problems for the baby. I guess the biggest question is: are you sure that your desire to know the results (which, as I understand it, are not 100% accurate anyway) is really worth the risk of the amnio? If so, then by all means, have the test.

I wish the best for you and your family.
--A.

I was 36 and having my first baby, so my doctor recommended an amnio. I had the test and there were no complications at all. Having a baby is such an emotional time, anyway, and with hormones going crazy....I wanted the chance to "prepare" in case something was wrong. Even the most open-minded person out there would have to admit that life with a child with Down Syndrome would be different, with pros and cons. I would have researched the condition, talked with other parents...I just would have wanted to know ahead of time.

Well - as a mom with a son with Down syndrome (he's 11 now), I can honestly say that your fears (too strong a word?) of life with a child with DS are not my reality. I was 41 when he was born, his older brothers were 10 and 13. I really don't believe that he dramatically affected their lives in a negative way.

Things changed, but not for the worse. Their lives and ours were more enriched by what he brings. I'm not going to say it's not challenging in some ways, but it's been a good challenge. And most siblings of people with DS seem to view it that way. I listened to a panel of siblings at the DSAGSL conference a couple of years ago, and it was so positive.

It's hard because so many people who aren't living it think those of us who look on having a family member with DS as a positive thing are delusional, but we're not. You're seriously not doing your other children a disservice by bringing a child with DS into their lives.

As far as testing goes, we knew we were going to keep him no matter what, so we didn't do any testing. That said, I know plenty of people who need to know and plan, and for them, testing is a good thing. It's whatever works best for you.

Good luck in your decision. If you do find out your child has DS and choose to bring him into your family, please know that there is tons of support for you and your family.

Hi S.,
With everything you have been through in the past, I would be really scared too. I will pray that God will give you peace to go through this. I get a newsletter from an organization that deals specifically with your situation and thought you might like to visit with someone that has been there. Here is their contact info:
NATHHAN/CHASK
P.O. Box 310
Moyie Springs, ID
83845
###-###-####
____@____.com
www.NATHHAN.org
www.chask.org

Tom and Sherry Bushnell lead this organization and have had a Downs baby themselves (that died at a young age) and have another Downs son now--I think he is adopted.

They counsel with families going through difficult pregnancies and can help find an adoptive home for a disabled baby if the birth family is unable for any reason to raise their child.

Hopefully everything will be perfectly normal but if you need someone to talk to, I can't think of a better place to call.

God bless you,
A.

I can totally relate to the need to know! I had my LO a week before my 36th birthday so I had all the extra screenings done. Our risk came back lower for Downs, but we had the amnio done anyway (even thought I have a terrible fear of needles!) to be sure.

Honestly, in general I have a hard time understanding why people WOULDN'T have an amnio if they have increased risks - not to confirm for purposes of termination or make arrangements for adoption, but to find out exactly what the baby might be dealing with so that the doctors (might even need a different hospital than planned) can be prepared at birth for any surgeries or other needs the baby might have. I can't imagine how I'd feel if something preventable occurred to harm the baby because I'd decided to not have an amnio just because I knew I wouldn't terminate. And, if everything comes back "clear", then you can skip all the stress you'd otherwise have from wondering for the rest of the pregnancy!

I do understand your concern, though, based on your previous experience. However, I think it's different since you're (a) at a different point in your pregnancy - your body isn't as "ready to go" and so would be less likely to react to a minor stress like amnio by going into labor, and (b) your body is not under nearly as much stress anyway, since this time you're just carrying one instead of two.

Your thoughts about the impact on your family of a child with DS are completely valid, but if it was me, I wouldn't waste the time wondering (it's a LONG TIME 'til January!!) - I'd just go find out.

ETA after reading later responses: Just to be clear, the early test (AFP) that you probably had done with the NT does not have a high "error" rate - it is giving relative chances, not definitve outcomes. So, it can say your risk is higher - but you still have an unaffected child - and it is not "wrong" - you just came out on the "78" side, not the "1", based on your results. The amnio, which you're trying to decide whether to have or not, *IS DEFINITIVE*. They are looking at the baby's actual genetic makeup, so they can see precisely how many chromosomes are there and whether any look unusual, etc. The only chance for getting wrong results would be the long shot of a paperwork/results mix-up of some sort. It sounds like *you* know what you're talking about on the tests, but I'm not sure the other posters are getting it straight.

Throughout my life, whenever I was in doubt, turmoil, and fear, it always turned out that trusting the enduring support of the One Who created us all was the right answer -- always.

Having been through 4 pregnancies resulting in one successful delivery, having a beautiful relative with Down's, having worked in health care for more than a decade, my considered opinion is that there is no legitimate reason for doctors to frighten pregnant women unless there is an imminent crisis and they must get the woman's full attention immediately.

When a doctor presents even the most slight possibility of danger, it tends to frighten people into making decisions based in fear. From my experience, the decisions I made purely out of fear were always my worst decisions. Most of us can't think straight once a doctor has frightened us to distraction. I have to wonder what percentage of patients and their unborn children are adversely affected by the fear doctors inspire. Do keep in mind that doctors often feel they must warn you about minuscule risks and offer some procedure to prevent people from taking legal actions based on a lack of disclosure. I don't think most doctors frighten their patients because they feel it is the best way to protect the patient. They are often faced with the fear that they need to protect their ability to stay in practice. But whether its your fear or the doctor's, avoid it. Act in wisdom rather than fear whenever possible. Call on wisdom to guide you. You might be surprised how well that actually works!

Whatever you need to do to come to a sense of peace with the Will of Divine Wisdom, it is probably best to do that before making any difficult or risky decisions. If you base your decision in faith, respect, knowledge, and love, then however it turns out, you will always have the peace of knowing you did your best to make the kindest decision possible. That knowledge will carry you. The regrets that result from decisions made in weakness are far more bitter and difficult to bear.

So, however difficult it may be, my suggestion is that you come to peace before deciding whether or not to have the amnio test rather than having the test in hopes it might bring you peace. Remember, there is a little person in there swimming in the soup of your emotions. Probably the most helpful thing you can do for that person is to seek sweet patience and abiding joy.

Once a child with Down's becomes an adult, there are government funded programs to help support them if they cannot function on their own. Generally, families are not required to continue to carry this responsibility alone. It all depends on the level of independence possible for each individual.

There are also programs for respite care for families who do not have a sufficient and trustworthy support system that would allow parents/families to have some activities that are not possible for a child with special needs. This service provides a certain number of babysitting hours with sitters who are trained to support your child's special needs. These hours are usually calculated annually and can be used for occassional breaks or can be saved up for a family vacation. Not all families qualify for this service. It is becoming more difficult to receive because so many of our children today have been exposed to risks that cause neurological disorders such as autism. It is usually based on family income and number of adults that are able to care for the child without the parents being present. Preference is given to single parents who have no family nearby to help (Thank goodness for them!).

PS If we started considering all the statistical risks regarding our children, we would all go mad. They're just statistics and risks. Look at the bright and shining faces of your children and the care in your and your husband's hearts. That is a reality. Hold on to reality, hope, and possibility. Then whatever decision you make will have a better chance of being the best decision.

I miscarried with my 4th pregnancy so I totally understand the risk and the possibilities following that pregnancy. I was 40 when I had my forth child (5th Pregnancy) and the risks there scared me a lot. I would never terminate either so the risk of the amnio wasn't an option for me because I didn't really need to know THAT Bad. However, I did opt for the "Advanced Maternal Age" Ultrasound. They can tell a lot with that test and the blood work as well. So maybe just do that. Good luck and my prayers are with you.
C.

Hi S.,

I have 2 kids, I had one at 36 and I had my last one at 42 years old. I was offered to do the amnio with both, and I declined it. Happily, both of my kids are perfectly healthy. A friend of mine (39 yr old) had a similar experience as yourself, and she did the amnio once with a high probability to have a DS child, the baby girl was born totally healthy. It is so hard to advice on something like this,it is a very personal decision. In my case, I did not want to do it because of the risks of the test itself, and because if I were to have a DS child I would continue with my pregnancy anyway. I just want to send you a big hug, I understand your feelings and I understand you are scared, whatever you decide it is your decision, just think in your baby in the most positive way you can do it, and take good care of yourself. Pray and expect with happiness and peace this baby, if she is DS or healthy she will the love of your life anyway.
Take care,
Alejandra

Being an older woman gives me greater incite into having a Down's Syndrome child.
My brother who is 52 yrs old now has spent his entire adult life in a group home with others that are Down's.
My mother died when he was 16 yrs old and had the capacity of a 3 yr old. All the other siblings were married with children and we all offered our home for his care.
We were told that having him in our home would destroy our normal families and create too much stress in our lives.
We opted to let him go to the group home and feel we made a good decision.
handle.
My brother was a sweet child that loved us all very much, but we gave up so much as a family because he wasn't able to care for himself. As children we were forced to take care of him and not play outside or go with our own friends.
This is a personal decision and you should talk to a professional or clergy if the test turns out positive.
My mother had no choice she learned of his handicap when he was born. There is no turning back then.
Best wishes to you
K.

S.,

The best advice I could give you would be to pray. I do not have a child with downs, however, I do have a 5 year old son with autism. I did not realize for several years but yes, it is a challenge to raise a special needs child. But, here is something I would ask you to think about. If the test could tell if you were going to have a child with autism or a heart defect or some other ailment that is considered a disability, would you opt to terminate the pregnancy? If this child does have downs & of all the women in the world, the Lord could have blessed with this child, why would he choose you? While I completely understand your wanting the best life for the children you already have, I am just saying I have learned more from my autistic son than I have ever learned from anyone else in my entire life. I also can't imagine teaching him more than I have already learned from him. I love the idea of my other children growing up with him as they will have the opportunity to learn things such as patience & charity that would not have learned otherwise. I hope that they feel a deeper love & appreciate more. We'll see! Anyway sure, sometimes I get stressed out but you know what, who doesn't. Another point, I don't know if you believe in God or not, but I believe that disabled children are one of the closest things we have to God. For me, there is a reason I was blessed with him & the same would go for you. You would adjust & love that innocent child like your others. Good luck!

T.

There's nothing wrong with being concerned and looking for peace of mind. Also, it's good to know ahead of time to make plans. Certainly, we all want to welcome any child we are given, but the reality of it is that certain children have additional needs and, especially with the way the economy is, we need to have as much time as we can to research the options and resources we may require.
Knowing will take a great deal of stress off your pregnancy and out of your household, regardless of the results.
I'll keep my fingers crossed for you.

Hi S.. It sounds like your dealing with a lot emotionally right now. You're concerned about the risks of the amnio while wanting to know the outcome of the test and concerned about a positive test result and how that would affect your growing family. It doesn't seem like 1.3% chance is that great, but the chance is still there. I can see that you want to prepare for a baby with downs, but at the same time you're not sure if the risks incurred doing an amnio would be worth it. My best advice is to first do lots of research about amnio (outside of your doctor's opinion) Get the most current research on the risks, reasons, benefits.... You may find the risk of putting you into labor early outweigh any benefit of knowing ahead of time. You may also want to start doing lots of research on having a baby with down's. Even if you decide not to get the amnio you can still be prepared for the possibility. Talk to other families with children of downs and talk to mom's who were also scared of the posssibilitie of having a baby with downs and didn't end up that way. Lastly, I really believe this is a decision that only you can make. It's going to take a lot of internal reflection, quiet moments alone, (yeah right! with three kids ;)) and really listening hard to that internal voice telling you what is right for you, your baby, and your family. My thoughts are with you,
K.

They told us that our son had signs that he would be mentally impaired at our 20th week. They said he had a 15% chance of being slightly to severely mentally handicapped (anything from reading troubles up through Down's). They asked us if we wanted to "terminate". We said no, we would take what came. We did monthly ultrasounds and an MRI (they can do that for fetuses!), refusing the amnio b/c of the risks. By the 8th month they told us he'd "grown out of" the enlarged ventricle they were worried about. He's a beautiful, healthy boy with above average intelligence. If we had terminated...?

S., I have a friend that had a downs baby 4 yrs ago. i am going to send this you and see maybe if she'd talk to you.
I have worked with downs kids and they are some of the sweetest kids ever. with no care or worry in the world.
I will say a prayer for you all.

Hi,
I am not going through the same thing. But, if you fear a health issue for you child. I would go to nutrition. I have always believed that you can fix or reverse medical problems with nutrition. That is my opinion. Please research nutrition. You have plenty of time. examples are Lecithin Granuals, noni juice, manatech products(I use them), berries ect. I even have doctors of alternative medicine. Please check into this, you will be amazed. Also read the Makers Diet.

Hi S.,
I also had a positive on the triple screen for possible Downs Syndrome. Just know that the test has an 80% false positive rate for Downs. We opted not to have the amnio. Instead we did a number of level 3 ultrasounds where they look for the signs for Downs Syndrome and can tell you if your chances go up or down once they look at the arms, legs, neck fold and heart. Our chances went way down after our second ultrasound and our daughter was fine. Best of luck on the decision to have the amnio or not.

S., hi I had to late babies, one at 29 and another at 40. They are twelve months apart. I had a Level 2 ultra sound with both of my children. We opted the amnio. Hace you talked to your dr. about this? I had the Level 2 performed at St. Lukes. L.

Hi S. - just wanted to share that when I was pregnant with my first a couple of years ago, my screening came back with a higher risk for Downs, like yours. I went in for the Level 2 ultrasound and possible amnio (same appt), and the ultrasound suggested our risk was reduced. While we were there with the specialist, my husband and I decided we wanted to go ahead with the amnio, just to know for sure (all debates/discussions on what to do with that info aside). My amnio went absolutely fine - no complications whatsoever. I just hadn't seen many postings here from women who had the test and had a positive experience, so wanted you to know it isn't always bad (in fact, if I remember right, statistically, the number of ammio's with problems are really low). Best of luck with your decision...

Good Morning S.. One thing there is always the chance something can go wrong with a pregnancy what ever your age.
I haven't been through what you are, we've had relatives told they were in your situation though. Both children were fine and healthy, the mom's were older then you also.

S., if the child is healthy or has a disability of some type you would still be the same age at their 20,30,40. If something happened to you wouldn't you think your children would always look out for each other anyway?

As far as knowing the results of the tests, it will give you peace to know one way or the other. And you know hubby's 42 yrs old cousins test came back her little girl would have Downs. Well Jordan Nicole is as healthy as they come with no disability. She is 4 now and a real go getter.

I can also understand your concern since you delivered your twins right after your Amino. Does the test Need to be done right now? Since you still have several months to term, and a history with amino why would your Dr risk it?

No one can tell you what to do S., we haven't walked in your shoes or lived in your home. But it's my understanding
(I could be all wet too) that children with downs are the most gentle, serene, love able children. Their smiles are infectious, and they are full of love and giving.

Whatever happens S., remember
God doesn't give us more then we can handle. He gives special children to very special parents. We can do all things through Christ who strengthens us.

God Bless you and yours abundantly
K. B

I had a friend who had the downs screening done. It came back pretty high that the baby would be born with downs. However, the baby was born without downs. She's perfectly healthy.

I've worked with the special school district with children with downs. The good thing is that for the most part, most downs children grow up to be smart enough to hold a simple (repetitive) job. Some are even smart enough to go through college. The part that's scary is that some are much lower on the IQ charts. So low they never really figure out 'kindergarten' throughout their entire lives. However, these children are still very sweet, lovable, great children.

The big difference in how the downs children scored on IQ's is reading, reading lots and lots from the day you bring the baby home from the hospital. The parents who committed a lot of time to the child just reading and playing, their children did great. Teach your children and expect them to reach the stars. It doesn't matter if they are 'special' or 'normal'. Have the same expectations and they will live up to them.

I agree with Kathy ... there are all sorts of support groups out there and programs for parents of kids with disabilities..A child with special needs will no doubt, need more attention then a "normal" child..I know, i have a 14 year old daughter who is autistic and now also has a second diagnosis..which drs are still trying to figure out what it is...it has been to say the least very challenging and stressful, but shes my baby and i will do whatever it takes to figure things out and make things work...but there's one thing you have to remember you're never alone...there are people all around to help you....a child with special needs is exactly that...very special, unique, different, yes but in their own special ways which makes you love them that much more...and you learn so much from them...seeing the world thru the eyes of a child with disabilities, you realize how much you take things for granted...they have a way of really making you change the way you think about a lot of things...that may sound strange to you..but im sure people who are raising a child with disabilities can relate and will understand...i wish you the best of luck and hopefully everything will be fine...

Hi S.~

First off, I'd like to share with you that my comments do NOT include any judgements and YOU will ultimately have to make the decision that is right for you, your unborn baby, and your family. My 4th pregnancy was also considered high risk and I was told my baby would have Cerebral Palsy (different medical concern than Down's but still would need lots of medical attention that I was fearful about). My daughter was born term by emergency c-section due to placental abruption. Long story, short...she survived after it took 16 minutes to resuscitate her. When your body goes to die all your blood rushes to your major organs first to try to save them so she did have acute kidney failure at birth. The doctors also told us that she would have CP; but about a week later they tested her again and found that brain cells that they thought were dead were actually just damaged and had already repaired and healed themselves. She spent 6 weeks in the NICU at Children's Mercy Hospital (they were the best!!!). And, I took her home exclusively nursing and without any meds or therapies needed. My daughter is now 3 years old and full of life and endless energy! She lives with one kidney which is bigger than the other but other than a tiny scar on the outside of her tummy where they had to give her dialysis...you'd never know about her fight for life until I shared it with you.

I too wondered/worried how having a special needs child would change all our lives but we prayed non-stop and had many others and churches pray with us too so that God would give us what we needed to make it, no matter what the outcome. I'm so grateful for faith and would encourage you to pray about the decision you have to make. And, I just hope my story about our little miracle encourages you too. Things don't always go like how we plan but that's part of the adventure of living. Who knows...God may pleasantly surprise you and if you are blessed with a special needs baby than God will never forget you or forsake you either. By having this baby, You won't have to wonder what life was like before your newest little addition. Take Care and Best Wishes!

i guess i would just pray for the child and have it god made the baby and we as humans really don't have the right to say who is good enough to be born or not . i just had friends who lost their child and fought for six weeks to save her life . she was born at 23 weeks.i believe god is only one to say who dies and who lives . all life is god given . i will pray for u .

If you decide to have the amnio, more power to you. I think you are right in empowering your family. Knowing before the birth of your baby will enable you take classes to get prepared and prepare your other children. Just say a prayer for the life of your child and everything will turn out how it should be. God will not give you more than you can handle. Good luck and God Bless.

I was 39 when I was pregnant with our fourth child. I was in the "old" age for having children. My doctor suggested the amnio and other tests since I was 39. However, hearing about the percentage for miscarriage was too high for me. My husband and I talked it over and I did not have any further tests. Our fourth son was a healthy 10lbs 8 ounces and is very smart and active. I know several women who had a down's syndrome baby on their first pregnancy in their 20's. There is no guarantee in life. So, my advice is listen to your body. If you feel that everything is ok, it probably is.

Try to face the good stuff for now. Until you know something is wrong, don't borrow trouble. I had a positive on the screening with my 2nd child and he's absolutely 100% healthy. So much can scare us while we're pregnant and with the scare you had with the twins, it's understandable. Lean on the husband a bit, tell him how you're feeling and let him carry a bit of that worry for you. God bless, I hope everything goes well.

Dear S.--My name is J. Hatfield-Callen, and I work at a place where there might be resources that could help with your questions concerning raising a child with Down Syndrome. Here at the Missouri Developmental Disabilities Resource Center we have a program called "Sharing our Strengths" which is the state-wide peer mentor program for parents, self advocates, and professionals. I offer this resource to you, as it would be possible for you to talk to a parent of an individual with Downs Syndrome, ask questions, and get experience-based responses.
I will tell you that I adopted a child 21 years ago (after 3 miscarriages)with developmental issues that are not Down Syndrome, but, what I can tell you is that after the 21 years, know that it has been an experience, but, I would not have missed it for the world. Raising my son has made me a better person, in many ways, and it brought experiences (both good and bad)that have made me look at the world in a totally different way, brought people into my life that would never have been there, and, given me patience and tenacity that I didn't know I had.
Call if we can be of any assistance--MODDRC's number is ###-###-#### or 800-444-0821.
Sincerely,
J.

I can relate to your thoughts about all the tests when you are older. I was 38 when I had my daughter, now 9. I had to do the ultrasound on the heart because of my families heart condition and they thought they saw a hole when they did the regular ultrasound in the ob office. Everything turned out find. Although you may think that you are too old for this child, mine is keeping me young! Yes, there are days when I just want to take a nap after working, keeping track of her gymnastics training, home life, and selling toys, but...I wouldn't change having her for the world. You might consider contacting the Downs Support group in Springfield and talk to their group leader. I believe they still meet at the big church out on 65 (sorry can't remember the name). I attended one of their meetings and they are a very caring, supportive group, who have tons of information to share. Talking with the families would also give you 1st hand experiences to help you make your own personal/family decision. Keep looking at the positive and follow your heart.

I understand completely your wanting to know whether your child has Down's. I was pregnant at 35 and decided to have the amnio because I wanted to know, too. I had decided not to terminate either way, but I wanted to prepare myself. I didn't want to have a baby and be "disappointed" when I was supposed to be bonding with the baby. I was afraid the baby might sense something. I put the quotes around that word because I also know that Down's children are wonderful and loving, and I wouldn't want to offend anyone, either, but when you imagine what your new baby is going to be like, you don't imagine those kinds of challenges. And it's great that you're thinking of your other children as well. It's part of what makes you a great parent.
I'm sorry about your previous amnio experience and your miscarriage. I think usually the risk to the fetus from amnio is pretty small, and mine went very well. Best of luck to you.

Well congrat's on baby #4! As for the concern about your baby having Down's, like you said it's a 98.7% chance that your baby will be fine. To be honest that's the amount of risk that anyone takes with any birth defect with any pregnancy (give or take a little) so I'm guessing the only reason you're freaking is because the Dr. actually sat you down and said "this is a risk". They only tell you what the worst case scenario with the idea that with info like that the only place you have to go is up = ) What I'm trying to say is don't worry about it because you won't even enjoy this pregnancy and your kids wont either. This is (I'm guessing) your last try for a baby, you and your husband need to enjoy it. Waking up early just to feel the baby kick, watching it on the monitor during a sonogram... Have fun with it and don't worry. What ever happens, happens and all you can do is to do your best with it. Congrats and good luck.

Well, you're already pregnant with this baby, not any other baby, so your other children are already affected. Any time you get pregnant, you are taking a huge chance. You already took that chance and got what you got.

S., I opted not to do this test. As it is not accurate at all. You could end up aborted or stressing over something that isn't even true. My cousin had the amino test done because of her age too. It came back that her baby had down syndome. Of course they were worried and stressed the whole rest of her pregnancy. However, when the baby was born she ended up being fine. The baby did NOT have down syndome or anything else. And to think that she or someone else could've and would've aborted the baby for no reason. I just think of all the children who weren't given the chance just because they may have had something wrong with them and didn't. I really wish they would stop offering this test until it was more accurate. It's just sad to think that I child doesn't get a chance at life because of a default in a test.

I'm lucky enough to have three kids but I also lost one with a miscarriage. It still bothers me to this very day. I wondering every day what that child would've been like, etc. It's especially worse around the time I lost the baby and when I should've had the baby.

But obviously the decision is yours!

Having 3 special needs sons/5 boys, I wouldn't trade my life experiences for anyone. I've learned so much, met so many wonderful people and my husband and I are very happy knowing we did the best we could, now that 4 of our sons of have graduated from high school. One will graduate from law school this year. It's been an adventure but a blessing!

You should have the amnio. Children are a gift from god but knowledge is power. ONly you can decide what is an appropriate decision for your family, have the test and then follow what your instinct is telling you.
T.

S.,
It is so difficult being pregnant today. When I was pregnant I never had to even consider any options. But, I would guess the answer is really very simple. A healthy child can bring disruption in a house hold, believe me I know. Life is not easy even with mentally and physically healthy children. But, I feel personally, that a child with special needs, the only difference is you know it will be challenging before hand. I have 2 children and one was an angel and the other well? But I would never change things for the world. I was blessed! Hope this will help. God bless you.
debbie

Congratulations on your 4th! While 1.3% is a very small risk, it is still a risk. If I were in your situation I would weigh the benefit of knowing vs. the risks of amnio. It could be helpful to know for sure if your child will have Downs, of course as you said you will love it just the same, but preparation tends to make things easier...raising a child with special needs is completely different from raising typically developing child. If the risks of amnio and preterm labor are too great for you to do the amnio, I would suggest researching Downs and what babies are like, just to be prepared, but if the risks aren't too great, have the amnio and have peace of mind knowing what you can expect of your precious new baby...good luck!

I believe all children are blessings. This child is yours weather or not he/she has a disability. I don't believe you love your baby any less either way and thats what you have to focus on. Everything else will fall into place. Sure, children with special needs do need additional care; but they also have the biggest hearts! You have to look at having a child with special needs as a gift, not a burden. They teach us SO much, like how to slow down, and how to look at things in a different way. I worked with adults with special needs for 4 yrs, and I might have asked myself the same question as you if I didn't. But getting to know a lot of people with disabilities, the thought doesn't cross my mind.