Health

Exclusive: Inside the Once Controversial, Life-Changing Fetal Surgery Used to Treat Spina Bifida

Editor’s Note: This is the first in a five part series where The Blaze has looked into a newer treatment for children diagnosed with spina bifida. While most would have the hole exposing his or her spine closed after birth, more than a decade ago surgeries that were considered controversial at the time began where the hole was closed in utero in the hopes of reversing some of the disabling effects of the disorder.

The first results of a federally funded human trial were released in 2011, showing the success seen in the new treatment thus far. We’ve talked to families who had the elective surgery before it ever entered a formal human trial and those who more recently have had the surgery since the period trial ended. We’ve timed this series to specifically run close to Glenn Beck’s Restoring Love as the parents of children who underwent the surgery, many of whom still have some disability, want the world to know the blessing of celebrating differences.

The Blaze Covers the Stories and Science of Fetal Surgeries to Treat Spina Bifida

Autumn Lubbers (Image: Emily McClure/Emily Megan Photography via Marsha Anderson)

Autumn Lubbers is going into the eighth grade. She played soccer for a year, runs on a track team and loves to swim in the summer months. She also plays piano.

A little more than 13 years ago, her mother Marsha Anderson (at the time her last name was Lubbers) sat in a doctor’s office waiting to learn the sex of her baby and ended up learning more than she bargained for. If Marsha had her daughter even a year before she did, Autumn may not be the same teenager she is today. Autumn might still have enjoyed science and math; her personality might have been the same. She would have been considered cognitively “all there.” But the sports activities listed above, pressing the pedals at the base of the piano, even walking in general might not be happening in the capacity they are today.

As a fetus, Autumn was diagnosed with spina bifida, which is a congenital disorder where the neural tube does not close before birth, resulting in a cascade of problems that range from hydrocephalus (water on the brain), an impaired ability to walk (if at all) and some incontinence.

Autumn still has spina bifida, but she also was number 29. This number indicates a surgery, which Marsha believes changed the quality of her daughter’s life for the better.

‘This is hope’

The Blaze Covers the Stories and Science of Fetal Surgeries to Treat Spina Bifida

Autumn Lubbers (Photo: Marsha Anderson)

In November 1998, Marsha was between 18 and 19 weeks pregnant. Her physician wasn’t animated or excited throughout her ultrasound though — and there was a reason.

Marsha recalls how little was explained to her about the diagnosis she received of spina bifida at that appointment. She was sent to a genetic counselor and was given a pamphlet on spina bifida with “horrible statistics based on 1960s data.” Feeling lost and needing more information, like most parents would do today, Marsha went online. There she stumbled on information on the first fetal surgeries as a treatment for spina bifida.

At the time, elective fetal surgeries where the child was not in a life-or-death situation were just not done, so this practice was considered controversial.

Armed with this information, Marsha went back to the doctor she had first seen about spina bifida and asked about the surgery, which at the time hadn’t even entered the NIH trial.

“He said to me, ‘I had the feeling you were one of those parents,’” Marsha said “This was my only hope at that point. I thought ‘you gotta try.’”

From there it was a whirlwind. Calls were made to Vanderbilt. The Anderson family quickly made their way to Nashville where they spent two days hearing everything that could possibly go wrong with the surgery — in addition to what could go right — and how Autumn didn’t need the surgery now. She could have the same thing done after birth. But could doing it before make a difference?

Spina bifida is necessarily not life threatening. Having a major, elective operation that went through the mother to get to the fetus is risky. Although any surgery is risky. But it was a risk Marsha — and several others at the time– decided was worth taking.

“Even after all that, I still felt pretty good about going through with it, but it was still scary,” Marsha said. “What they told me my daughter would have to deal with her entire life is horrible, and this is hope.”

At 23 weeks, Marsha’s womb was cut open and the same operation that would happen to any baby with spina bifida outside the womb took place with the baby still in it. A little more than 10 weeks later on Feb. 19, 1999, Marsha delivered in their hometown.

With doctors in the area not as familiar with the new surgery, Marsha had a letter from Vanderbilt that her daughter was not to have a shunt placed in her head. A shunt is an pump or drain that is inserted at the location where cerebrospinal fluid backs up (a condition known as hydrocephalus) due to a Chiari malformation, which is improper formation of where the cerebellum should sit at the base of the skull, causing this blockage. There were many goals with the surgery, but the main one was to reduce the likelihood of the child needing a shunt by reversing Chiari malformation before birth. Shunts often get blocked themselves or infected. They sometimes need to be replaced and. according to several parents, are generally the bane of a child with spina bifida.

What doctors were beginning to see in this time before the NIH trial was that in sewing up the child’s back in utero, the Chiari malformation began to reverse and there was less of a need for shunts.

The Blaze Covers the Stories and Science of Fetal Surgeries to Treat Spina Bifida

Compilation of photos of Autumn as a baby. (Photos: Marsha Anderson)

‘I walk a little funny, so what?’

Anyone in what is called the “fetal surgery family” will tell you that fetal surgery is not a cure to spina bifida. It is only moving up a treatment the child would otherwise have had outside the womb in the hopes the early repair could protect the spine from further damage in the womb.

Marsha calls her first nine months with Autumn a honeymoon period. She acted no different than any of her other children. It was only when some milestones reached at a certain age by her other children began being missed that Marsha really remembered how different Autumn was. At the time knew really what to expect of children who had undergone fetal surgery as a treatment.

Around 21 months, Autumn began walking with a walker. Today, Autumn wears ankle braces for support. Some children with spina bifida who received treatment after birth have braces on their legs as well. For family outings that require more intensive walking, Autumn uses a wheelchair.

Many of Autumn’s classmates do not know she has bifida or notice that she wears braces. If someone says something about it, Autumn retorts: “I walk a little funny, so what?”

Still, her condition is not without its complications. In April, Autumn suffered a severe infection that Marsha said showed them again the “grave reality” Autumn’s condition at times, “even if her surgeries have corrected most of what makes her different on a daily basis.” The urologist Autumn visited in Oklahoma City told Marsha complications that Autumn suffered at the time used to kill those with spina bifida, but now they have a “nice bag of tricks” to remedy most situations.

“Those words are still very heavy on my heart,” Marsha said.

Autumn does have some close friends with whom she trusts some of the more private details of her condition. She has a friend at school who also has spina bifida, with whom she can relate.

“I just walked up to him, said ‘hi’ and showed him my braces,” she said. “As a friend, I just think of him as a normal friend, but having him makes me feel better.”

‘I feel really grateful’

Autumn recognizes the sacrifice her parents have made to make her life easier in the long run. Marsha, like many parents of children with disabilities, emphasized how difficult it is on a marriage. She and Autumn’s father ended up getting divorced. Marsha has since remarried.

The Blaze Covers the Stories and Science of Fetal Surgeries to Treat Spina Bifida

The Anderson Family (Photo: Emily McClure/Emily Megan Photography via Marsha Anderson)

Autumn recalls when she went to camp a few years ago in Arizona where there were many kids with different levels of spina bifida.

“I was the only one there who could stand up without a crutch,” she said. “I feel really grateful for all that my parents have done for me. My life could have been a lot worse.”

What would Autumn say to other kids with spina bifida — fellow fetal surgery babies or not?

“You have to know there is a lot of different things you’re going to have to do, but I feel better because I know Christ has a plan for me.”

Stay tuned for the second part of this five part series tomorrow where the Blaze will cover the scientific aspects of spina bifida, the surgery, and the clinical trial recently ended to its success.

Comments (29)

  • awadeva
    Posted on July 10, 2012 at 1:02pm

    We were a few weeks too far into the pregnancy to have the surgery. I was also given horror stories about Maddy, and what she wouldn’t be able to do. (nothing good was said) It didn’t matter what they said. She is my baby and I am not a murderer. My BEAUTIFUL little girl was born on February 14, 2005. She is the best Valentine i have ever received!! This very night she will be in a swim meet. She can walk, run, swim, and ride horses. Her opening was L4-L5, but her ability is better than that. Yes, we have troubles, but when they pop up, you deal with it and move on. No disability in our house. I tell her she can do anything the wants. She might do it differently, but she can do it. If you asked her what she wants to do, she will tell you. “I am going to be in the olympics. I will win gold in swimming and equestrian events.” Watch out here she comes. :)

    Report Post »  
    • FatFreedom
      Posted on July 10, 2012 at 4:49pm

      Thank you for sharing, you made my day :)

      You are an inspiration, and i pray for a rich blessings for you and your daughter. I pray that God will shower you both with joy and through that you will continue to be a blessing for others.

      Report Post »  
  • digilaird
    Posted on July 10, 2012 at 5:57am

    We are beginning this journey with Spina Bifida by adopting a baby girl from Eastern Europe. You can make a difference by visiting our site and spreading the word. http://bit.ly/4Paisley #HelpPaisley.
    Thanks for listening.

    Report Post »  
  • Diane TX
    Posted on July 10, 2012 at 4:17am

    I know that I’m a very lucky person because my son and my grandchildren were all born with healthy bodies and intelligent minds. Although, a higher power might have decided that I wasn’t up to the challenge of having a disabled child or grandchildren. I’m humbled by the parents of disabled children.

    Report Post »  
  • mharry860
    Posted on July 10, 2012 at 2:01am

    My second daughter was off handed diagnosed with Spina Bifida. The second time they wanted to do an MRI, which requires sedation for an infant, I said hell no! I complained to my Chiropractor about it and he said to bring her in. I was not going to do that, but my wife did and he fixed her in 20 minutes. Sadly this girl actually had it, but these asshat, supposed professional’s terrified my family with that. Probably just to soak the insurance with more bills.

    Report Post » mharry860  
  • 2_known
    Posted on July 9, 2012 at 8:07pm

    I don’t think Encinom is really a liberal…. if you are please take a moment and explain why most are anti-American, anti-life, anti-independent, anti-self control, anti-family, anti-marriage, anti-Christian, anti-military….. everything that makes America you people seem to think is bad! Can you please explain that? Oh and can you state where you were educated? I’m so intrigued by your stupidity!

    Report Post »  
  • RVing-Patriot
    Posted on July 9, 2012 at 8:02pm

    Great article. I look forward to reading the other parts. My daughter was born with spina bifida in 1983. She’s living well independently.

    Report Post » RVing-Patriot  
  • blair152
    Posted on July 9, 2012 at 6:02pm

    Inspiring.

    Report Post »  
  • BellaMia7
    Posted on July 9, 2012 at 4:07pm

    It’s liberals who believe that people are a “cancer on the earth,” not conservatives. Conservatives believe that every life is precious.

    Report Post » BellaMia7  
  • BellaMia7
    Posted on July 9, 2012 at 4:04pm

    While I waited with my husband in pre-op, the woman through the curtain next to us was explaining to the nurse why she was having her abortion – the baby had been diagnosed with spinal bifida – and it wouldn’t be “fair” to her or the baby to go through with the pregnancy. I was horrified. I had a wonderful cousin with spinal-bifida – but I also knew about the inter-uterine corrective surgery as I had worked for an OB/GYN – (and also remembered the office grief when a woman decided to abort twins, because she wouldn’t be able to fit into her wedding dress at the rate she was growing. – true)

    Anyway, I had volunteered for Birthright, the pregnancy support organization whose motto is “Every Child has a Right to be Born.” I was frantic and knew I had to do something – but knew it couldn’t be illegal or immoral – so I opened my Bible which I had brought with me to study while my husband was in surgery – and started to read from Psalms 127:3-5

    “3 Lo, children are an heritage of the Lord: and the fruit of the womb is his reward.
    4 As arrows are in the hand of a mighty man; so are children of the youth.
    5 Happy is the man that hath his quiver full of them: they shall not be ashamed, but they shall speak with the enemies in the gate.”

    I read it out loud. I read it twice. My husband and I discussed between ourselves how precious our children were to us.

    A few minutes later when we wheeled passed their open curtain – the couple had a stricken look on their fa

    Report Post » BellaMia7  
    • BellaMia7
      Posted on July 9, 2012 at 4:15pm

      (continued) The couple had a stricken look on their faces as they made eye contact with us. They knew we knew – and they had heard. A few minutes earlier they had been laughing and joking with the nurse who then shared with them that she – the nurse had had an abortion while her husband was in Vietnam. She said it was just “bad timing.“ Then she reassured them that what they were doing was ”for the best.” That’s when I whipped out my Bible. When we finally rolled past a few minutes later, the laughter and smiles had been wiped off their faces. God help – they know not what they have done.

      Report Post » BellaMia7  
    • TheJeffersonian
      Posted on July 9, 2012 at 9:36pm

      So…You made a family feel unhappy and uncomfortable. Congratulations? It’s the height of arrogance to pass judgment on others and then pat yourself on the back about it publicly.

      TheJeffersonian  
    • jemkallen
      Posted on July 12, 2012 at 4:43pm

      So, let me see. You read your scriptures with your husband out loud. (Freedom of Speech), you were wheeled past someone else in a crowded hospital room and said nothing to others, and you are the bad guy? There was no judgement passed but so what if there was. A fact is a fact is a fact. Abortion kills people, not guns, not knives, not whatever weapon you can name. People kill people be it in a hospital, in a prison, in an alley. If they felt uncomfortable it was because they knew what they were doing was WRONG. None of that is on you Bellamia. Sounds to me like some one is being judgmental and it is not you or me Bellamia.

      Report Post »  
  • Entwife
    Posted on July 9, 2012 at 3:47pm

    The wonderful legacy of unfettered American medicine. Inside the Life-Changing Fetal Surgery Used to Treat Spina Bifida. How many of these surgeries will be rationed by IPAB (Death Panel) to otherwise worthless unborn children who could have been much more cheaply aborted? ObamaTAX. LIAR.

    Report Post »  
    • Thatsenough
      Posted on July 9, 2012 at 9:01pm

      Well, Margaret Sanger will be proud. That’s saving money by eliminating the poor, the sick, the disabled, the elderly, the slow, the different. How different? Who decides who’s defective? Who would be left? Not even enough to wait on the ubermenschen.
      I pray daily that this evil law is somehow stopped. A lot of MSM are hoping that people will come to see it as inevitable and the machinery is moving to implement it. My brothers, who are cognitively challenged are a lot nicer than some normal people I meet. God help us all….

      Report Post »  
  • jemkallen
    Posted on July 9, 2012 at 1:10pm

    My son was born with Spina Bifida in 1994. His opening was in the T2-T3 area. He was on a vent, in a wheel chair, and had a shunt due to the Arnold Chiari II malformation. He came too soon for those surgeries and died on July 5, 2011. But the only credit that liberal colleges and government will get is that they spent weeks trying to force us to abort and then months trying to force us to unplug him. That is all the credit they get. I lived through it first hand so unless you did do not try to tell me who gets credit for what. My son lived to be almost 18 years old. That credit goes to GOD and GOD alone. Vanderbuilt and all their medical ethicists and doctors kept giving him death sentences over and over and over again. He surpassed all of it. A free and capitalist market is what makes this stuff happen. Why do citizens of all of these loving liberal caring nations with government health care come here to get treatment? Because, so far, we are still a free nation that will find solutions to problems not a government causing the problem. Obamacare/tax will never pay for something like this. They will only force you to abort. To think other wise makes you a fool. Yes, I am angry and I have every right to be.

    Report Post »  
    • epistrophy
      Posted on July 9, 2012 at 1:57pm

      Jemkallen, I’m sorry you had those issues with Vanderbilt. We had the fetal surgery there in 2000 and spoke with the ethicists as well. We had the impression that they were just being realistic about the risks of the surgery and condition. They didn’t try to sell us on aborting at all.

      Report Post »  
    • LetFreedomRing
      Posted on July 9, 2012 at 6:00pm

      @Jemkallen, I’m sorry for your loss. I think some credit for his longer life must go to you and your perseverance. It’s parents that drive free-market solutions that bring about such great things. The combination of all these efforts is what will be missing when the government interferes. They try to take the place of the parents (and God for that matter.) Who will push for solutions when you take the heart of loving parents out of the equation? And I’m afraid, as you are, that there will be no place in the world to make up the difference as the U.S. has for all these years.

      Report Post »  
  • Walkabout
    Posted on July 9, 2012 at 11:30am

    What? Surgery on an unviable tissue mass? Where is planned Parenthood when you need them?

    Seriously this gives lie to everything the left says about abortion.

    Report Post »  
    • biohazard23
      Posted on July 9, 2012 at 11:39am

      A liberal would have killed her regardless.

      Report Post » biohazard23  
    • epistrophy
      Posted on July 9, 2012 at 1:54pm

      Actually, Biohazard23, my “liberal” family also had the surgery, as have hundreds of other “liberal” families. You speak out of ignorance.

      Report Post »  
    • kaydeebeau
      Posted on July 9, 2012 at 5:14pm

      @ Ephis…I still bet you are “pro-choice” therefore the original premise is still correct. You may have “chosen” to let your child live but for a leftist (liberal) the “choice” is still fatal to most babies.

      If it isn’t a baby, how are you pregnant? Also, the “cure” for pregnancy is birth not abortion….

      Report Post » kaydeebeau  
  • biohazard23
    Posted on July 9, 2012 at 11:20am

    Wow, what a miracle. She’s very blessed.

    Report Post » biohazard23  
  • bdandsl
    Posted on July 9, 2012 at 11:17am

    A miracle from God. Bless you, Autumn and your family.

    Report Post » bdandsl  
  • rickc34
    Posted on July 9, 2012 at 11:11am

    Christ does have a plan for you Autumn. Thank You Lord for giving the Doctors the knowledge and ability to perform these kinds of operations.

    Report Post »  
    • encinom
      Posted on July 9, 2012 at 11:45am

      Actually, thank the liberals and the liberal art colleges that provided the education that trained the doctors. Thank the federal government that helps to finance not just the educaiton of the doctors but much of the research that occurs at the teaching hospitals.

      Report Post »  
    • biohazard23
      Posted on July 9, 2012 at 12:11pm

      Yeah, because there are certainly no private donors who contribute to teaching facilities and scholarship programs….. You know, those evil 1 percenters, selfishly keeping their money and all that, never doing anything worthy with their blessings. Typical liberal mentality: Government – the Great Savior! Sheesh….

      Have a blessed day, you poor dear.

      Report Post » biohazard23  
    • bobefann
      Posted on July 9, 2012 at 1:46pm

      @ encinom
      it would be nice if u liberals actually used facts. Private companies fund almost 75% of clinical tests for medicine and over a quarter of doctors graduate from private universities (which are not funded by government).

      Report Post » bobefann  
    • kaydeebeau
      Posted on July 9, 2012 at 1:56pm

      Yeah like the govenment funded Monroe Carroll Vanderbilt Children’s Hospital – oh wait – it happens with private funds mostly from those evil 1% Monroe and Carrol Family …..

      Report Post » kaydeebeau  

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