Seeking Moms with Any Experience with Spina Bifida

L., I can attest that that test has false positives. When I got that test for my son it came back positive for Spina Bifida. Although we ended up having an amino and two extra ultrasounds it was determined that he was fine and I now have a healthy one year old. Also, as I write this I can think of two friends who also had the same experience. I know it is scary. I was very upset as well. My doctor got me in for an ultrasound right away after the positive result. I hope this is the same for you. For me the faster I knew what was going on the better. The time we had to wait for the amino results was horrid even though I knew friends who had gone through the same thing. I wish you all the best.

My girlfriends test came back in the high range for spina bifida or downs. She,obviously was concerned the entire pregnancy for the health of her child. They were sent to a specialist, who really didn't didn't confirm either way. She had a healthy boy.

Good Luck and my prayers are with you for a healthy baby!

My now 8 year old daughter was supposed to have Spina Bifida or Downs, I refused the amnio and went on. All the ultra sounds were fine and she is the child in control of the class now. She is a very bright healthy child. Talk to the doctor and wait till the ultrasound.

Hi,
No wonder you're nervous L..
Doesn't it seem as though maternity care has turned into maternity scare?
Just because you are offered diagnostic tests, does not mean you have to agree to do all the tests - especially if you KNOW that there is a high false positive rate of a test. The "results" will always be inconclusive at best and add undue stress during a time that should be filled with joy and connecting to the beautiful life inside you.
Have you ever considered a midwife or a free-standing birth center to receive a more woman-centered approach to your pregnancy?
You may find what they offer to be of higher quality standard with an emphasis on your true well-being and emotions.
It's never, never too late in your pregnancy to switch to a health care provider ( midwife means WITH WOMAN) that views pregnancy as a normal state of health, and not a pathological state of impending disaster.
I hope this helps.

If you are referring to the screening blood test they do....mine was false positive. Even tho I would raise whatever baby God gave me, I still wanted to be completely prepared for what I would be facing, so I had an amniocentesis and genetic counseling. That way I didn't have to face the rest of my pregnancy wondering, and I had an accurate answer so I could prepare. Turned out that I didn't need to, the baby was fine. Since then, I have talked to hundreds of mothers who had the same false negative. Im not going to tell you not to worry, I know that is impossible...but try to sit down and ask yourself what you need to do to have a happy pregnancy. If you need the answers, like I did, go for further testing. The amnio wasn't that bad and I had to have 2 more with my following baby (different reason) that I handled better because of the previous experience. One last (well, first) thing...pray for Gods peace...and I'll pray with you!
~L.

My test also came back positive. The doctors office called me and told me that the test came back positive for open spine and wanted an ultra sound the next day. I was very nervous but the ultra sound showed that my sons spine was fine. He was born two months ago at 8 lbs 14 oz and perfect. I had the test done with my first two pregnancies also and the results were fine so I never thought anything of it. I know I would never do it again. I told people about my results and it's amazing how many woman told me that they had the same thing happen to them. The doctor told me that its often inaccurate because it's just a screening. But it informs them that they may need to do more tests. So, I wouldn't worry too much about it until you have your ultrasound. If you want the peace of mind, request that you have it as soon as possible.

My cousin had this test with a false positive. I know it can happen but don't know the % of false positives. Good luck!

the tests are inaccurate.. wait until you have the ultrasound done at 18-20 weeks.

the drs thought there might be a severe (fatal) problem with my daughter and she is a perfectly normal very smart 2 year old.

DONT stress about it! My test for Spina Bifida came back EXTREMELY high risk for spina bifida. I refused the amnio test. I cried for 2 weeks straight until the level 2 ultrasound. Level 2 ultrasound was normal and I retook the AFP test and it came back normal!

If I have another baby I would NEVER take these genetic tests again...

Good Luck:)

Laura,
They should be able to determine difinatively by ultrasound whether or not your baby has spina bifida. I would insist that you have one before drawing any conclusions. Also there are varying degrees of the disease depending on where in the spine it is. The spina bifida blood test is very time sensitive so you are right...the test can produce false positives. I would also recommend that you get more than one opinion. If your child does have spina bifida there are many resources for support and understanding...make sure your doctor is providing you with all the information or giving you places to go to get it. Beaumont hospital has advanced ultrasound if you are looking for a location and also terrific support programs. I actually didn't take the blood test because I was traveling during the time frame when the test is needed...my baby's spina bifida was found by ultra sound. My thoughts are with you in this scary time.

I dont have any experience with spina bifida, but I remember when I was pregnant, that they said that those tests do come back as a false positive alot of the time. I would talk to your doctor and see what he thinks, maybe get another test if you can. There are alot of web sites for spina bifida. www.sbaa.org is one. www.kidshealth.org/parent/system/ill/spina_bifida.html, you can try these to see if they help. Good Luck!!

I've had friends and friends of friends that have had some very scary prenatal testing results. ALL of their babies were born perfectly fine! My doctor offered me the tests but said there is a high false positive rate. I declined for that reason. Many abnormalities can be found during the routine 20 week ultra sound! Please don't stress about this. I'm sure everything will be fine. Best of luck to you!

L.-

When I was pregnant with my son I had an Alpha-Fetal-Protein test (It may be a Triple Screen now) but anyway, it came back high (24) so they had me come back in and take it again (also a 24). Then we went throught genetic counseling and scheduled an amnio. I was 22 years old and couldn't believe I had to have an amnio! Long story short-I now have a huge, healthy 13 year old teenager boy! He didn't end up having a spinal deformity but he does have what looks like a small bellybutton at the top end of his bottom crack, but that is genetic also, as many of my family members have one.

Hi L.,
As you move along in your pregnancy, I believe that hole in the lower spine may become more visible to the ultrasound tech. <i'm saying may cause i just bill med charges, I'm not a tech myself>
If you baby does have s. bifida. There is a procedure to close up the hole in the back while the baby is in utero. I'm not sure what functionality is returned to the baby with that procedure, but it would probably be worth contacting the s. bifida organization to get more information. Just so your prepared. I know 2 sisters <adopted> that have it and they are doing great. One is moving her way up the competition for wheel chair baseball! She's really good! Both are very bright.

Good luck!
J.

I'm not a mom with a child who has spina bifida but my daughter's father's family has it strong in their family. They have 3 that were born with it and one who passed away from other complications. The other 2 girls are doing just fine, the oldest graduated from highschool and is very active, living on her own, the younger one is still at home with mom doing very well also. I do know if it runs in your immediate family you have to get a shot to help prevent it happening to your unborn if you are pregnant, as far as testing I don't know to what extent or how far they will go but I do know they take precautions if you're farther along in your pregnancy ie. (ultra sounds, amio, etc). My daughter will have to get that shot if she ever decides to have children because of how strong the gene runs on her father's side of the family...and you would have to repeat the shot everytime you get pregnant. I would definitely get a second opinion, false positive's can occur with spina bifida testing. Start doing your own research on different websites like Web MD.com or spina bifida.org... Stay strong, please don't stress out, and keep your faith...God will make everything alright...

Personaly I do not trust very many of the Prenatal tests. My sister was told that her baby either had Trisony 18, which is fatal to the baby, or Downs Syndrom. She gave birth to a healthy baby boy almost a year ago!
I have also know other women who have had false prenatal test readings. I pray that your results are false as well.
Blessings, K.