OT: 37 and pregnant again with #5

[Ellielovesdisney]

The new test can pick up about 92% of DS if done well. It has been available for about 5 years but seems to still be regional. Here in Atlanta I think it is the standard of care to offer it to everyone regardless of age. I don't think everyone should have it...only those who want to know this kind of information. Of course as stated only amnio or cvs will offer a clear diagnosis. Many people have the 1st trimester screen...look at the risk results and then decide on the amnio. As other posters have said...there is sometimes power in information...and others would really rather not know this kind of thing.
My DBF has a daughter with a significant chromosomal abnormality. She did not have any prenatal testing done and was glad she didn't (she was 30 at the time). She never would have terminated that pregnancy and just would have been miserable during that time knowing what was coming. (BTW her DD is 6 now and doing better that anyone could have predicted)
Personally I was 37 when DS was born. I had the aforementioned 1st trimester screen, and was reassured by the results. I probably would have had the amnio or CVS is the results had shown a risk of greater than 1 in 250 or so. I am the type that needs to be prepared.
You know...everyone's situation and philosphy on this kind of thing is different. You need to think about what you would do with the results, and how much you want to know...and then have the testing that makes sense for you.

 

[DISNEYFOS]

The new test can pick up about 92% of DS if done well. It has been available for about 5 years but seems to still be regional. Here in Atlanta I think it is the standard of care to offer it to everyone regardless of age. I don't think everyone should have it...only those who want to know this kind of information. Of course as stated only amnio or cvs will offer a clear diagnosis. Many people have the 1st trimester screen...look at the risk results and then decide on the amnio.

At the Boston hospital I went to they call it the First Look and its offered to all regardless of age. Its done in the first trimester and its a Nuchal Translucency scan (ultrasound to look that the thickness of the neck fluid) paired with bloodwork to look at hormone levels. HCG, Papp-A. It still is just a screening though like others have said...Its not definitive unless you do the Amnio or CVS.

To the OP, I bet your OB could refer you to a genetic counselor to talk to about all this...I did and it was very helpful.

 

[SplashMountainMama]

Congratulations on #5. I am 35 and just had #6. I chose not to have the testing for any of the kids becuase I knew I would never abort so I figured why put myself through it. I know that in the last month of #5 and #6 I started to worry a lot that after having so many healthy children (knock on wood) we were pushing the odds, but I think you just have to trust that whatever will be will be and you will be able to handle whatever you are given. Best wishes for a healthy and happy pregnancy!!!

 

[minkydog]

Congratulations to you! A new baby!

I had my last two babies after the age of 35. I knew I would never abort a baby, so it just didn't make me feel comfortable doing the tests. I figured if there's something to worry about, I'll worry when the time comes. No sense in ruining a perfectly nice pregnancy worrying about something I can't control.Not everyone feels that way, but it made sense to me.

Incidentally, my last child was born with a rare chromosomal disorder, kinda like really severe Down syndrome (except its not associated with advanced age). Amnio would have diagnosed it if we had done that. Instead, it took us 2 yrs to put a name to his disorder. Had we known how severely handicapped this child would be, we would NOT have aborted, but we probably wouldn't have pushed him so hard either. See, he's not supposed to be able to do anything --he's not supposed to even be alive. But alive he is, and kicking...and swimming and running and laughing and hugging. Yes, Christian is severely mentally handicapped,but it doesn't slow him down much.

I have never regretted not doing testing. Best wishes to you with your decision. You will know what is right for you.

 

[deedeetoo]

I have only been pregnant once and I was 38 when it happened. I choose not to test. I was told that the testing carries a slight risk of miscarriage. We had tried to get pregnant for years so there was no way I was going to do anything that might jeopardize it, even if the chance was very small. Also, I know I would not have aborted even if a problem was found, so why go through the trauma of testing?

In my case, everything worked out fine. I gave birth to a healthy baby girl (now 9 yo).

You have to make your own decision. What would you do if the result comes out bad? If the answer is nothing, I would skip the testing.

 

[Janet Hill]

I had my last two at 40 and 42 and had no testing. I would not have aborted under any circumstances, so I figured why bother. My 10 yr old has aspergers, but that would not have been determined from amnio.

 

[roliepolieoliefan]

I had DD when I was 38.

I did have a CVS after 2 miscarriages, now looking back on it was pretty dumb.

I started to bleed heavy about a week after the CVS and thought for sure I was miscarrying. I went for an u/s and it ended up to be a placenta previa which caused the bleeding. The placenta moved before delivery and all was fine, plus DD's CVS was normal too.

She is a now healthy 4 yo princess.

I f I had it to do all over again , I wouldn't have the testing. The bleeding scared the crap out of me. I thought the CVS caused me to lose my baby. If nothing would change anyhow, why chance it?

Congratualtions!

 

[PaulaSue]

I would do the testing just to know what is ahead (I had to findout the sex with each of my pregancies, I am a big planner) but I wouldn't do anything if there were problems. KMIM

Congrats!!!!

 

[tinaluis]

DON'T HAVE THE TESTING DONE!!!! I just had my 4th baby this past August at 38 (almost 39). I did have the testing done and a 3-D ultrasound showed an enlarged cisterna magna (the area where the spinal cord connects into the brain). I had to have a fetal MRI, which was inconclusive, and they wanted to do an MRI after Max was born. I resisted because they would have had to sedate him completely. They were very concerned about Dandy Walker Malformation which I found out is a rather serious condition which might impair Max both physically and mentally. I worried, and worried and worried some more. So much so that when we saw the Neurologist at Max's 2 month checkup, I was ready to just have the MRI done so we would know what we were up against. The Neuro. decided then that he didn't want to do the MRI but rather wanted to see Max in another 2 months. That appointment was on 12/17 and he's completely released Max from his care. He told me that he's glad I trusted my instinct because Max didn't need an MRI after all -- he probably just has an enlarged cisterna manga without having any other problems. Of course, we're incredibly relieved, but also realize that we had many sleepless nights, crying our eyes out for nothing.

In my opinion, if you know for sure that you wouldn't abort, then I'd skip the testing because it just gives you worries and wrinkles. In fact, when I was researching the condition that Max might have had, I ran into several Moms who had all the genetic testing done and several other tests and that didn't identify Dandy Walker Malformation and even a few who got negatives on the alpha-feta-protein and had Down Syndrome babies.

Congratulations! Enjoy your pregnancy whatever you decide!

 

[grlpwrd]

Congratulations! I had my 5th child when I was 38. I decided to consult with a genetic counselor and get tested without being invasive. I knew the risks of getting an amnio or CVS done and I wasn't willing to take those chances.

I saw specialists at the Eastern Virginia Medical School in Norfolk.... This is the med school which invented Seasonale and where one of the first efforts for a "test tube" baby were performed in the US. They are experts there.

Anyway, after looking for markers with my ultrasound, taking tests except the amnio or CVS, and going over my pedigree, the geneticist there told me I had a 1 in 367 chance of birthing a child with a developmental or genetic abnormality. Even if I consulted with experts and I was informed, though, they could not guarantee anything.

I am glad I had non invasive testing, but it drove me crazy just to know what I knew. In that way I regret getting the testing done, but I was also glad to know should my baby have needed specialized care in utero or upon birth.

Blessings to you and good luck in whatever you decide ....

 

[Sleeping~Beauty]

I'm currently very pregnant, and 36. They have such new screening processes that they didn't have three years ago, with my son. It's the nuchal translucency test, done during the first trimester. You have a choice of how many blood tests (two being more accurate 93%). You go to the genetic counselor who explains the testing, then you get an in depth ultrasound that measures the baby's neck, and this is followed by two blood tests, one that day, and one a few weeks later.

The combined results will give you a statistic for odds on Trisomy-18, Down's Syndrome, and certain birth defects. This is not foolproof, and even though it is a wonderful non-invasive screener, it is not 100%, and no good doctor will ever give you 100%. But if your tests come back with good odds, you may opt out of the amnio.

Good luck with everything.

 

[blessedby3]

I just had my 4th baby 3 months ago at age 40 (turning 41 in a week now). I decided not to have any invasive tests done - we would not abort anyway. I declined all tests except for the gestational diabetes (I was boderline with 2 of my 4 kids) and the high tech ultrasound where they measure the thickness on the back of the neck (ours fell in the normal range). The bloodwork usually goes with that, but my DH and I opted not to do it. It would give false positives just like the AFP test and I didnt want to worry constantly about that. We knew for sure we wouldnt do amnio because of the miscarry risk. I was more conscious of things like DS during the early stages of my pregnancy, but as time went on I decided to let it all go, trust that God knows exactly what is best, and enjoy my last pregnancy. We now have a beautiful and healthy baby girl to complete our family!!! Good luck to you.

 

[Nom]

The only thing I want to add, based on what my friend went through, is that even if you say you would never abort, you never know what you would do if you were put in those circumstances. Here are the scenarios of two friends who said they would never abort:

Friend number one (mentioned in my previous post) skipped the prenatal testing, but had the 20 week u/s which found a severe chromosomal anomoly (form of Downs but with severe heart defects). Baby would not survive the pregnancy, and baby's heart was already failing. There was a chance that the baby's natural death in utero would effect my friend's ability to have children in the future. Based on these outcomes (and she even got a second opinion), she chose to interrupt the pregnancy at 21 weeks. She so wished she had gotten the amnio or CVS, so that if she had to make that choice she could have done it earlier on in the pregnancy. Next baby, she had a CVS.

Friend number two skipped prenatal testing with her first baby at 24. She would never abort, so why test? Her baby was born with a terrible illness (I believe it is called MLS), suffered terribly in his short life, and died at 6 months in pain and struggling. Since then, she has always gotten prenatal testing and would abort any baby with this illness, as she never wants to have to bring a baby into the world who would suffer and die as her first did.

So long story short, prenatal testing is not just all about Downs. Sometimes it is about conditions that are incompatible with life- conditions where baby will live in terrible pain for a short time, and then die. And when you are faced with something like that, even if you say you would never abort, you really don't know what you would do if you were put in that position. That is why I have prenatal testing.

 

[KirstenB]

I'm of the mind that to test or not to test really doesn't have to do with abort or not abort but rather preparedness. In the unlikely event there is a problem, you would want the right kind of specialist there and ready when the child is born. I say take advantage of advances in medical science to ensure the most positive outcome.

I was 37 with my second child. I had an amnio because one of my blood tests came back out of normal range. and it changed my odds (1 in 67 compared to (1 in 4000 for my 1st DD) (because thats all the tests can do is tell you your odds). I had the amnio at one of the best hospitals in the country. The chance of miscarriage by a trained experienced facility is almost non-existant. It was wonderful to hear all was well and I was able to rest easy. For me anyways more knowledge is better than less.

Just my opinion.

I agree 100% with this post. I had an amnio at 39 with our 2nd child. If there was something wrong with our dd, so many things can be corrected while the child is still in utero...I've read of some amazing stories of spina bifida being corrected. Anyway, best wishes with your pregnancy.

 

[DVCJones]

First, Congratulations. I had my last DD at 35. I know all about those tests.

If you are not prepared to do an amnio after having the AFP test, I wouldn't bother. The AFP tests result in a lot of false positives. ( I had one) So then your left with another choice. To amnio or not to amnio. that to me is the real decision.(I did this)

Yes, there is a small (very small) chance of miscarriage, but in my case the % numbers were so high for having a D/S baby I just had to know. I wanted to "prepare" in the event that the baby was D/S. Like other have mentioned knowledge is power. Many babies could benefit from having additional doctors or facilities available at birth. Also, If something was wrong your doctor may prefer for you to have a c-section rather than a vag. birth. Heart defects can be common in DS babies and I just wanted to know and give the baby the best chances.

After all that worrying, I should tell you that all was normal. The amnio came back normal and I also knew without a doubt that I was having a girl. Part of my decision was due to my first being born with a serious illness that I was not prepared for. In the end that turned out okay too.

Looking back, I would do all the testing again. I had peace of mind for the remainder of my pregnancy. I could relax and look forward to the birth.

Wishing you a smooth pregnancy!

 

[jodifla]

The only thing I want to add, based on what my friend went through, is that even if you say you would never abort, you never know what you would do if you were put in those circumstances. Here are the scenarios of two friends who said they would never abort:

Friend number one (mentioned in my previous post) skipped the prenatal testing, but had the 20 week u/s which found a severe chromosomal anomoly (form of Downs but with severe heart defects). Baby would not survive the pregnancy, and baby's heart was already failing. There was a chance that the baby's natural death in utero would effect my friend's ability to have children in the future. Based on these outcomes (and she even got a second opinion), she chose to interrupt the pregnancy at 21 weeks. She so wished she had gotten the amnio or CVS, so that if she had to make that choice she could have done it earlier on in the pregnancy. Next baby, she had a CVS.

Friend number two skipped prenatal testing with her first baby at 24. She would never abort, so why test? Her baby was born with a terrible illness (I believe it is called MLS), suffered terribly in his short life, and died at 6 months in pain and struggling. Since then, she has always gotten prenatal testing and would abort any baby with this illness, as she never wants to have to bring a baby into the world who would suffer and die as her first did.

So long story short, prenatal testing is not just all about Downs. Sometimes it is about conditions that are incompatible with life- conditions where baby will live in terrible pain for a short time, and then die. And when you are faced with something like that, even if you say you would never abort, you really don't know what you would do if you were put in that position. That is why I have prenatal testing.

Yes, I find the "I would never" lines kind of wishful thinking, or very selective posting. I was talking to a speech therapist who was saying what different kinds of kids she deals with today than when she started her career 20 plus years ago.

She said she taught her last Down's child a few years ago, when before, that was a type of child she'd see frequently. Also, very few mentally handicapped children. Today, most of the kids she works with have a language disorder or autism.

The truth is, most -- women 85 percent to 90 percent -- who find out their children' have Down's don't continue the pregnancy.

 

[Nom]

Yes, I find the "I would never" lines kind of wishful thinking, or very selective posting.

I agree- although you know, I think people really believe that it is as cut and dry as "I would never" unless they have been there, or know someone personally who has.

My friends are the types who would never ever think they would abort. They wanted these babies badly. They love kids and considered themselves definately 'pro-life' before this happened to them.

Now, although they still would love to choose life, they know through personal experience that it's not that cut and dry. Choosing life does not always mean a downs baby that can still have a happy life. It can mean a baby that is born with no skull that only lives 30 min. It can mean choosing to carry to term a baby that will live a week, in severe pain. Is that the right choice?

It's all very personal and you don't know what you will choose until you are there. That is why with my next pregnancy I want all the good info I can get. Ever since I held my friend in my arms after she returned from the hospital visit where she interuppted her pregnancy at 21 weeks- a baby she desperately wanted- since I held her as she cried, I am not the same, and I can no longer say blindly "I would never abort."

 

[homemaker]

Thank you all for your thoughts. I am a worry wart and I think I will worry regardless. I think SplashMountainMama said it best, have we pushed our luck with 4 healthy children. Do the odds change with the more children you have as well as age? I worried that something was wrong with my last and everything was fine. He came 6 weeks early, had to stay in hospital for 10 days but, was(thank God) healthy.

I think the Nuchal Translucency Scan is what my midwife was talking about doing. I don't want to do anything that is risky so this many be the right choice for peace of mind.

Again thanks to all

 

[jackskellingtonsgirl]

I think a good reason to have testing is so that if there IS something wrong you can work out how to handle it. You have time to research what resources and programs are available and learn what you need to do to get enrolled, network with other parents of kids with the same issues, and get adjusted emotionally. You can prepare your other children for a sibling who is "different". You AND your spouse will have time to come to terms with your feelings before you have a newborn thrown into the mix. If you will need additional help with childcare or if you are going to need a baby nurse with medical training you will have time to interview candidates while you are still pregnant.

I know a mom who had a baby with Down syndrome when she was 38. Her AFP showed an abnormally high chance of Down's, but she blew it off as being based on her age. She went into labor at 29 weeks and they did an ultrasound that also had indications of Down's, but again, she pooh-poohed that information. They were able to stop her labor, and she went on bed rest until 32 weeks. The baby was born about 34 weeks. The nurses in the delivery room commented that the baby had Down's, and the mom was FURIOUS. How DARE they make that assumption? They had all of the genetic testing done on the baby (under an assumed name, even though these are just ordinary people) and of course it came back as Down's. Her husband didn't deal well with the diagnosis and didn't bond with the baby at all. I am under the impression that all of the preliminary indicators of Down's were kept from her DH, which in retrospect probably was not smart.

I would go ahead and have the tests. The risk of miscarriage with amnio USED to be about 6%. They have now added a day of bed rest after the procedure and the risk has dropped to less than 2%. Many good wishes to you for a healthy pregnancy and a healthy baby!

 

[Rylee]

Here's the question. Would you or have done the extra testing for things like down syndrome? I will be 38 a couple months before I am due. I guess any age over 35 puts you in a higher risk group. The results wouldn't change anything. Planned or not we will still have this baby. I think I would just like to be prepared, but are you ever really prepared for something.

YES, I have, and yes, I would recommend it.

As you can see from my signature, my children are 20 years apart in age. I was 21 when we had our firstborn, and 41 when we had our youngest. I had an amino during the last two pregnancy's. We had no intentions of aborting, either, but I was nervous and thought knowing would help me relax for the rest of my pregnancy.

All went well with our 4th child. With our 5th, during the amnio, we asked if she could tell us the sex... (My M-I-L was dying and we wanted to tell her what we were having) the sonographer said she couldn't be sure because she was having trouble viewing that area, but she thought the baby was a girl.

The morning they called to give us the amnio results, was also the morning of my M-I-L's funeral. (She died the day after Xmas.) Everything is fine, she said. She then asked if we wanted to know the sex? I told her we already knew we were having a girl. A girl, she asked, how did we know that? That's what the sonographer told us, I said, but I also added that she did say she wasn't 100% positive. She asked me to hang on and when she returned to the phone, she asked if I would come back over for another sono, the amnio revealed I was having a boy, a healthy boy.

The following week, my husband and I went for another sono. During the test, the sonographer left the room and reappeared with a Dr., first one and then two. I knew something was terribly wrong. Two different times they had me get dressed and walk the halls hoping it would make the baby change positions, two more times I laid on that table for a sono, while they all talked in whispers and pointed at the screen.

After 4 hours, they had us sit in the office and explained our baby had organs growing on the outside of his body. (The first sonographer had trouble viewing the sex because the external organs blocked her view of the area, and she was too inexperienced to know what she was viewing.) It was too early to tell which organs were involved and they couldn't tell if the baby would live. Come back in 2 weeks, is all they could say.

A few weeks and a couple of sono's later, they were able to tell which organs were involved and how rare it is... 1 in 40,000 births. (They had never seen it before). The baby could live but would need multiple surgeries, and one immediately following his birth. For the next 3 weeks, they continue to remind us... there was still time to abort!

Our son is now 6, and we cherish him. He has had 5 surgeries and has more planned in his future. He's is doing excellent in first grade and just sang a solo in front of 500+ at the school Xmas concert. He is smart, comical, loving, etc., and excels at sports.

Even though we had problems with the tests, having had those test, allowed me to research the best hospitals and Dr.'s for our son's medical condition. We found one of the best specialists in the country at Children's Hospital, Boston... 350 miles from where we live. We travel during my pregnancy to meet and make arrangements for our son. I chose to deliver him in Boston, to be near his Dr.'s at birth.

All this to say -
It scares me to think if I was not prepared prior to his birth, I may have allowed well-meaning local surgeons to operate on him. This could have had less than desirable result with consequences that could have lasted a life time and made future surgeries necessary and much more likely to be unsuccessful.

And, about the Dr.'s weekly reminder... I could abort -

About the third time he mention it, I said, "Is this not a life worth living?" "Yes, of course it is," he said. "Can my child think, love, laugh," I asked. "Absolutely," he said. "Then why do you keep bringing up abortion," I asked. "We are required to inform you of you options," he said. We told him there was no need to mention it again.