would you have an amniocentesis if you were me?

Question

I'v had 3 early miscarriages. I'm now for the first time entering my second trimester and my doctor says everything is fine. I'm 38 and this is my first baby. This is going to be the only baby that I ever have because I am too old and pregnancy is too hard on my body. I am positive that I cannot deal with a baby with a disease that will kill him or her within hours or months after he is born. I am not 100% sure that I could deal with a baby who had downs syndrome either, mostly because I would be 39 years older than him, and when I die, I would have to know that my child would probably have to be institutionalized which to me is a horrible thought. Amniocentesis increases the risk of miscarriage to 1 in 250 women. What do you think I should do?

Answer 1

I understand your dilemma. I had an amnio with my first baby (I was 35). It was a hard decision to make. I will say this: Their speeches about how dangerous it is and how big of a decision it is was way worse than the actual event. I was so scared to have it done after all they said, but when it was over, I saidl "That's it??" I don't want to lead you to think it is easy, but it was not as bad as they made it sound. It was nothing more than a needle poke in the belly to me.

Answer 2

I was 39 when I had my son who has Down syndrome. While I do appreciate your fears and concerns, I hope you will do a little research before deciding you can't deal with a child with DS.

I opted not to have the amnio done because I didn't want to add any risk to my pregnancy. We have a beautiful little boy who, while delayed, is very bright. We have taught him sign language to use until he has an oral vocabulary and he uses his signs very effectively. He get physical and speech therapy every week as well as being in a playgroup.

Your concerns for when you child are older are understandable, but it is unlikely that you would have to institutionalize your child. There are assisted living homes that your adult child could live in fairly independently. Your child could go to college, have a job, drive a car, even get married. Opportunities for children with DS have changed dramatically in the past few years, but sadly, there is still a lot of misinformation out there. You can also set up a trust for your child so that their benefits are not impacted by any money you have set aside for them to live comfortably.

I invite you to look at the forum at www.downsyn.com and read some of the posts there from parents. You will see some of the concerns, and a lot of the joys. Sure, we face our share of struggles, but in the scheme of things, it really isn't that hard...and the rewards are priceless.

Additionally, even if you were to have a child with no problems whatsoever, there are never any guarantees in life. Children develop conditions, have accidents, etc. and if that should hapen, then you have to deal with it. There are numerous resources for kids with DS and you will never know a greater love.

In addition to the website I gave you, I would suggest you phone your local chapter of ARC and ask if you can speak to some families of children with DS, or even some older people with DS. I think you will see that those of us who have been blessed with a child who is genetically enhanced feel very lucky indeed. It may not have started that way, we were scared at first, or angry, or sad...you name it, it's all normal...but once you hold that child and watch what they can do, it's clear that you haev been truly blessed.

My prayers and thoughts are with you. Everything you are feeling is normal, but it does get so much better. Please give this child a chance!

Answer 3

I know that as your age increases they are going to want to do an amnio, I had 2 miscarriages and fought with the question of whether or not I wanted one if they said I should get one. My doctor first allowed me to take the quadruple screen test, which isnt 100% but it's getting closer and closer to being accurate and all my numbers came out perfect and she didnt even end up offering me the amnio, also if you want ask your ob to refer you to a perinatal doctor also becuase their sonograms look for certain signs for down syndrome, the tissue at the back of the neck, the growth of the arms and legs, all can be indications of down sydrome-- THEN depending on the results I would decide on the amnio or not. The risk of miscarriage is high to me also with an amnio even to a perfectly healthy baby. Good luck to you and I pray you have a healthy baby in a few months!

Answer 4

Personally I wouldn't because of the risk, (there again I have not had miscarriages in the past). But in some cases, they are necessary to prevent risk. If your past miscarriages were not a result of an amnio, I would give it some consideration. It could pay off. Talk to your doctor and the baby's father. Don't do anything based off what we say. We can only tell you what we think. This is serious. This is your baby. Your choice. I wish you all the luck in the world.

Answer 5

If I were you I would have it. I do not have kids, but I do not plan on having them until I am older, so I have thought about this issue.
However, my cousin, who is also your age, used the 3 and 4-D ultrasound, which together with blood work is nearly as accurate as amniocentesis, without the risk of miscarriage.
They can see if the baby has normally developing scull (abnormalities are sign of genetic disorders such as Downs) and it's much less invasive. The downside is that it is expensive if insurance does not cover it. You might want to ask your doctor about it , and you might be able to work your way into having it covered.
If the baby is healthy, you will not lose anything, and you will be able to see a 3 dimensional image of your kid, which is very cool.

Answer 6

I think you should let your pregnancy progress as normal, and try to get all these thoughts out of your mind and concentrate on having a happy pregnancy. :)

You're right about amnio. creating a risk for miscarriage, and honestly, it sounds like this might be your last chance.

If I were you, I would make an amnio. the last thing on my mind, and thank God that I had gotten farther along with this pregnancy than any of the others, and bide my time until I met my sweet, beautiful, wrinkly little baby. :) Good luck with whatever decision you make. Ultimately, you have to follow YOUR heart and head and choose what to do.

Answer 7

I wouldn't do it. I would do the detailed screening ultrasound if you are that worried about it. It is most likely your child is very healthy. Is there a family history of chromosome-related problems?

IF your child is suspected of having down's syndrome, please talk with parents of children who have this condition before you make any irreversible decisions. I have a friend who gave birth to her baby 5 days after my youngest was born. She found out a couple weeks later that the baby does have Downs. She is a beautiful healthy and wonderful child. Also if you did not want to parent a child with Downs, there are people out there who would adopt the baby. All I'm saying is know all your options. I've heard some doctors tend to paint a very bleak and less-than-accurate picture of life with Downs syndrome.

Answer 8

Women over the age of 35 should get an amnio, and it is a normal thing that OB/GYN's suggest for pregnant women of these ages.

A woman who gets pregnant at the age of 35 has a chance of having a down syndrom baby is 1:378 - and it jumps to 1:106 at the age of 40. Not to mention, a woman at the age of 35 and having a baby with any chromosomal defect is 1:192, which jumps to a chance of 1:66 when she hits 40!

Your chances of having a baby with a chromosomal defect is higher than your chance of miscarriage. And, in this day and age - the procedure itself has gotten to be more simplified, and the chances of miscarriage are actually decreasing. Modern medicine advances every day, but there is nothing that can cure a chromosomal defect in a child, and nothing that can cure a child from Down's Syndrome.

If you do end up with a child that has a defect - you will need to make some strong choices. Most of these children are now living in their 50's, with the help of modern medicine & successful cardiac surgeries. Think about where you will be - more than likely in a nursing home or 6 ft under. Who will be there to take care of him/her? Yes, a home. Not to mention the fact of how hard it is, to take care of one in the meantime. They have very slight attention spans, multiple medical problems - and require more than twice the work than a normal child.

It is best to get all of your facts. And prepare yourself. Good luck to you.

Answer 9

I would not have the test when it was offered to me. I have a downs nephew who is 24 years old and going to a special college for the disabled. Now a days it is not a big thing. Also if you live to the average age for women then your son/daughter will be about 39 or 40 years old and by then with the medical and social break throughs they will not be institutionalized but living a life of their own like my nephew is now.

Answer 10

Yes, it's better to know if your child going to have severe birth defects. Some of the defects are horrible and the child could be born and die soon after birth. Loosing a new born baby would be very traumatic. That would be very difficult to endure. It's better to know in advance to prevent that from happening. For that reason it is a risk that is worth taking.