Hand to Hold's Official Blog: Written by Parents for Parents

Prenatal Screening

Our 30 weeker, now healthy and 3 years old

Kylie, born 10 weeks early, is now 3 years old

When I was 17 weeks pregnant, my doctor asked if I would like to have a blood test done to screen for possible neural tube defects and chromosomal abnormalities like spina bifida and Down’s Syndrome. Since my husband and I had talked about screenings prior to pregnancy, we decided to go ahead with it. Some parents decide not to get these screenings but we felt that if our baby was to have a birth defect, we would like to better prepare ourselves for any challenges we might face as our child grew.  We didn’t expect any abnormalities with a test like this so we went ahead with it; it just felt like a normal blood test that I had at my other prenatal appointments.

About two days later, my doctor called and said, “Hi Dani, we got your results back from that AFP screen we did, and we got a positive result for spina bifida.  The results are very low…”  I didn’t hear the rest of what he said at that point. I felt sick and so scared.  Thankfully, I had such an amazing and understanding doctor that he asked me to come in that next morning.  He knew I would want to go over the results of the test to find out what was going on with our baby. I went in the next morning for an ultrasound to see our precious little girl and fortunately, upon further examination, the ultrasound showed no abnormalities with our daughter’s spine. My doctor sent us to a specialist just to get another look. The specialist offered to do an amniocentesis, but we declined.  The ultrasound had put our mind at ease, and we didn’t feel that any more testing was needed.

After this scare, I did some research and found that these tests produce a very high false positive rate. In an article done by Parents Magazine, they revealed that “About 3 to 5 percent of women who have the multiple marker test will have an abnormal reading, but only about 10 percent of those women will have a child with a genetic problem.” I found that a lot of doctors are not offering these tests anymore and that some insurance companies don’t cover them.

Some parents feel that knowing about any conditions their child may have will help them be better prepared to care for their child.  Others choose not to have prenatal screenings based on their personal beliefs or religious beliefs.  If you choose to do prenatal screening, research any tests and screens that your doctor offers.

Helpful Sites I Found in My Research

Mayo Clinic
What to Expect
WebMD
Parents.com

Dani Curliss About Dani Curliss

Dani Curliss (TX) is the mother of two, Kylie and Austin. Kylie was born 10 weeks early, weighing 2lbs. 10oz., and Austin was born at 37 weeks. Both babies were born early due to preeclampsia. Kylie is now three and has no lasting complications from her prematurity. Dani and her husband have made their life mission to raise awareness of prematurity and preeclampsia and she shared Kylie's NICU journey on her personal blog. She learned a wealth of information during their six-week NICU stay, and finds healing from their experience by helping and encouraging others with their story. You can find Dani on Pinterest, or email her at d.curliss@outlook.com.

Comments

  1. Hello! I was very hesitant to have the AFP done, and ending up coming back with a high risk for a NTD. After almost 20 ultrasound appointments with a perinatal specialist, they never saw an issue with the spine or brain, but were certain our baby ‘girl’ would have a form of dwarfism. They told me I would need to deliver by 36 weeks, and if the baby stopped growing beforehand then ‘she’ would be delivered then. Long story short, I delivered a 2 lb 10 oz little BOY at 32 weeks, but it took me until he was almost 10 months old to find a neurologist willing to do an MRI because he had a sacral dimple, gluteal cleft, and butterfly mark that ALL pointed to an issue with the spine. Through the MRI, we found that he has a tethered spinal cord and a syrinx in the spinal canal. I will say, the prenatal testing scared me, then I stayed in a consistent state of shock, worry, and desperation throughout the rest of my pregnancy. It was terrible. But because of having the test, and having the perintal specialist

  2. Sorry, i accidentally published before I had finished. I’ll finish here… we had the shots to develop his lungs a few days before he was delivered, which was such a blessing. My son has some other congenital abnormalities, but the AFP was right about his NTD, even if at first other doctors didn’t see a problem. He doesn’t have any form of dwarfism, he was just IUGR. I’m glad we had the testing, but looking back it caused so much unnecessary heartache that I don’t know that I would do it again.

    • Dani CurlissDani Curliss says:

      Thank you so much for sharing this! It is interesting to see the other side of things with these tests. I am so thankful to hear that your little BOY is doing well. We did not do the test the second time around, with our son. Blessings to you and your family!

      ~Dani

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