“Spina” What? 10 Things to Know About Myelomeningocele

Mom kissing baby's cheek

You’ve just been told by your doctor that your baby has spina bifida. Between the tears you’re fighting back and the questions running through your mind, you’re probably scratching your head in confusion about all of this “spina-something” business.

Spina bifida. Myelomeningocele. A neural tube defect in which the spinal column fails to close completely within the first 28 days of fetal development.

You’re feeling scared and sad. Perhaps your doctor recommends termination. Perhaps not.

When my son was diagnosed with spina bifida at my 19-week anatomy scan, I was in your shoes. I was terrified. Worried. Unsure about the future.

I’m not a medical professional. I’m just a mom who’s been there. But over the last couple of years, I’ve learned a lot about spina bifida. And I’m going to share some of that with you.

Here are 10 things you should know about myelomeningocele:

  1. It’s not a death sentence. With proper medical care, over 90 percent of people with spina bifida live well into adulthood. They’re living longer, better lives these days, in fact. In the next several years we can expect that number to grow, thanks to better knowledge and awareness.
  2. There is a great amount of outdated information out there. I recommend backing away from Google. Find a pediatric neurosurgeon to speak with (they’re the experts on spina bifida). And seek support groups to join. You can find support groups for parents on places like Facebook and Babycenter.com.
  3. This isn’t your fault. One of the biggest myths is that folic acid completely prevents spina bifida. It is true that the occurrence of neural tube defects has reduced since the FDA mandated the inclusion of folic acid in things like breads, cereal, and flours. And the CDC estimates that folic acid supplementation prevents 1,300 cases of spina bifida each year.

    However, the FDA also recognizes that only around 50% of cases are related to folic acid deficiency. I know women who took folic acid for years while trying to conceive, and they still had babies with spina bifida. While there are many reasons to make sure that your body is getting the right vitamins during pregnancy, spina bifida is caused by a combination of genetic and environmental factors. Unless it is established throughout your family’s history, you probably won’t ever know what caused it.
  4. It’s more common than you think. Don’t know anyone who has spina bifida? Consider this statistic. In the US alone, spina bifida occurs in almost 1 out of every 1,500 live births. That’s a lot of people! The odds are high that at some point in your life you’ll meet someone who has it.
  5. There are actually 5 common types of spina bifida. In addition to myelomeningocele, they include myeloschisis, meningocele, lipomyelomeningocele, and spina bifida occulta. Those are big words, so I’ll spare you the medical mumbo-jumbo and get to the point. Some forms are “open” and others are skin-covered. The open forms are typically synonymous with health challenges. The odds are that your baby has one of those.
  6. Those challenges probably aren’t the ones you’re thinking of. Spina bifida may cause paralysis or weakness in the legs and feet. It can cause a buildup of fluid in the brain, known as hydrocephalus. This is often caused by Arnold Chiari malformation, a herniation of the brain stem into the top of the spinal column, which blocks the flow. Spina bifida is often associated with some degree of bowel and bladder dysfunction, depending on the severity of nerve damage. Luckily, these conditions can be treated in many ways.
  7. Each section of the spinal cord controls a different region of the body. Since the spinal lesion typically occurs in the lower thoracic, lumbar, and sacral areas of the spine, muscle paralysis most often occurs somewhere from the waist downward. Therefore, the higher on the spine the lesion is, the more it could affect your baby’s health. But that’s not always the case.
  8. Spina bifida is a “snowflake condition”. Just as no two snowflakes are exactly alike, no two people with spina bifida are alike. Some people have a shunt or a surgery called an ETV to treat hydrocephalus. Some people don’t have hydrocephalus at all. Some people use walkers, crutches, or wheelchairs to achieve mobility. Some people walk without assistance.
  9. Your baby’s spina bifida will need to be surgically repaired. While most babies undergo the defect repair and spinal closure within the first 24-48 hours of life, fetal surgery may be an option for you. It carries serious risks, and not everyone will qualify. But there is evidence that performing the repair in utero can lessen some of the effects caused by spina bifida. For my son and me, the benefits outweighed the risks. And I knew that even if we didn’t qualify, I wanted to try everything in my power to offer my son a better chance at life. That being said, fetal surgery is not the right choice for everyone, but it is an option that is becoming more popular these days. You can learn more by contacting a hospital that specializes in fetal care.
  10. Finally, and perhaps the most factual bit of info that I’ll share with you is this. Your baby will amaze you. You’ll stand in awe as you witness your child’s resilience, strength, and determination. You’ll learn and do things that you never imagined you’d do in order to give your child the best life possible. And you’ll wonder how you ever lived without your beautiful, unique child.

I understand that you’ve been overwhelmed by information – I’ve thrown a lot your way. The best thing that you can do for your baby right now is to seek support and help, and to get educated about spina bifida. There’s a world of possibilities out there just waiting for your little one’s grasp, and there’s a community of parents like me who’ll be with you every step of the way.

For more information on Spinal Bifida and Myelomeningocele Surgery, visit our Fetal Center.

 

Megan Wright

About the Author: Megan Wright

Megan Wright is a writer, opera singer, and disability advocate. In 2015 she and her son Nico underwent fetal surgery for spina bifida at Cincinnati Children’s. Since then, she has dedicated her life to spreading awareness about spina bifida and helping other parents whose children are affected by it. You can learn more about her and her son by visiting her blog at balancingthebaby.com.

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Comments

  1. Hberry October 31, 20:06
    ?? I love everything about this post. Thanks so much, Megan!
    • Megan November 03, 09:00
      Thank you for reading!
  2. Summer October 31, 22:51
    This is beautiful Megan. I'm so excited that you are putting your story out there and reaching out to others. You are a wonderful mommy to Nico!
    • Megan November 01, 09:57
      Thank you so much, Summer! I really appreciate you taking the time to read this!
  3. debbie November 01, 20:15
    I was born in 1954 and so when I was born they didn't do anything with my back - it closed over with skin on its own apparently - I have a lump that sticks out from my back - think it is L4 or L5 - paralyzed from supposed waist down - I wear long leg braces and use crutches - have a very full life. Married, 3 kids, 7 grandkids - I am blessed
  4. Stormy November 01, 23:11
    This is good supportive information I wish it were available 40 years ago. My son has many of the problems you mentioned. We did not allow the tube from the brain to reduce his severe hydrocephalus because 90% of the kids were dying of infection. He made it through his first surgery at 6 hours old. And so many more... He walked for the first time at 3 years old. He currently is a double amputee in a chair. A major issue has been decubitus ulcers. Infections resulting in the amputations. In August, he and his bride celebrated their first anniversary. She is a teacher for disabled children. There is someone for everyone. His life has been like the song played at their wedding.. The broken road". so many painful delays that led them to find happiness . He proposed from a hospital bed?. As parents, all we can do is be there for support.?
  5. Anne November 06, 20:24
    My son was diagnosed 10 years ago. Your article sums up what I felt perfectly, especially #2! That was the breaking point for me! My husband threatened to throw away the computer away if I did anymore "research." My son amazes me every day and with the care he receives from Children's Hospital Boston he is leading a fulfilling life! Thanks for sharing!!
  6. Jdesi November 06, 22:16
    My daughter and I had fetal surgery in August for her Spina bifida, and she was born at the beginning of October (one month old today). She already amazes me.
    • Megan November 07, 21:28
      Welcome to the FS club! Are you on Facebook? If so, and you haven't already sent a friend request to Fetal-Surgery Spina Bifida, please do so you can get added to our support group!
  7. Ishayu November 07, 07:32
    Good document. My son born with lipomyelomeningocele. We did operated on last January 2016. After operation feel he is getting less strength into feet. But fortunately now he is able to walk without support but left feet no properly stable. Regular exercise is going on. Let see how much it will be rectify. I was fortunate that before surgery there are no issues regarding straight.
    • Shadowjack November 07, 12:51
      I was born with MYELOMENINGOCELE. The doctors gave me a 50-50 chance of walking, but I did! The repair they have today is amazing! When I was born, I had a lump om my back at the last vertebra the size of a lemon, which they removed and padded the area with tissue! In 1993, I started having problems walking! I went to the University Hospital to have it fixed in a 71/2 hr. operation! I walked in -but didn't walk out and have been in a w/c since! Growing up, this problem created obstacles, but it also created miracles as well. I got to make my dreams happen! For 11 years, I was a Special Effects Make-up Artist for Film & Television in Hollywood! After that I became a Professional Close-up Magician and did that for the next 30 years! I now am a Humor Writer for various areas for the Disabled! I have NEVER felt condemned or threatened by this! It has allowed me to work a little harder & longer to fulfill the dreams I've had! I have never worked for a living - I've had fun for a living! My life has been Magical because of this - Literally! I am now 62 years young.......and besides when you get to be this age "What doesn't fall off or break - Dries up or leaks"! LOL
  8. Teenfish November 17, 23:34
    I was born with Spina bifida level L4/L5 and a Shunt. I am age 40 now. I run / am the founder of a SB awareness FB Page, Everyone Being Aware of Spina Bifida. My reason for starting the page was / is aware people of SB, help parents facing a SB affected pregnancy, help parent with children with SB and finally to help adults with SB. Thanks, Ryan Krygier
  9. Rocktapus January 05, 10:46
    Our daughter was born with Spina Bifida over 5 years ago and the scariest thing was the amount of information everyone throws at you. On top of your great article, I remember all the "fruit signs" Lemon sign, Banana sign, for the Arnold Chiari Malformation. It definitely forces you to confront that you can't control what life throws at you. Luckily, SB can be fought and, this morning, our daughter was happily stomping in the snow in her snow shoes and crutches and rain boots that fit over her shoes and braces. Life is amazing :)
  10. Miche February 04, 18:59
    Great article. My daughter was born with Spina Bifida in 1991. Every time we went in for our yearly check up she was doing something else they said she would never be able to do. So true that every one of them is different. Thanks for the great article!
  11. Ann February 05, 00:34
    What a great article! It's one of the best I have readd. We have a 6 year grandson with spina bifida. He is such an amazing young man! We are so blessed to have him in our lives. He has taught us much.