Newborn Baby Inside Incubator

Here in America, many of the decisions about health care are based on how hospitals can gain a competitive edge in the marketplace, not on benefits to patients. Read my post here for more details on how this works. Prenatal surgery for spina bifida myelomeningocele is a specialized service that hospitals can offer to stand apart from other hospitals that might be competing for patients. And that dynamic means that it’s in the hospital’s interest to perform as many prenatal surgeries as possible– whether the child and mother will benefit or not.

I have seen some centers that do explain that prenatal surgery has risks and that it’s not a guarantee…and then I see others that really push it as the answer to parents’ problems. And then I see news articles that get in on the act talking about the heroism of the whole endeavor.

This may be why I see so many parents, surgical centers (and news articles) who are excited about what amount to very average results for SB, like walking with a walker and not being a vegetable. There some children who are doing better like walking consistently without a device or not having a shunt. But most parents have been told by doctors that their child will be a bed ridden vegetable so their expectations are very low. The equation looks something like this: (Spina bifida-accurate information) + 10 (prenatal surgery)= MIRACLE!!! 

I see a need to further explain the issues related to this procedure beyond my previous post on the subject. And so this is one question I tackled in a health ethics class paper…

“Media sensation can also cloud the issues surrounding new treatments. When the results of the randomized trial comparing outcomes for infants receiving prenatal and postnatal surgical repair of lesions associated with spina bifida myelomeningocele were released, news outlets quickly began broadcasting stories of the surgery, primarily focusing on the positive outcomes such as reduced need for ventriculoperitoneal shunts at 12 months of age and an increased ability to walk with crutches at two and a half years of age. For news coverage, the stories of grateful parents who believe their children have a dramatically improved life from a new medical procedure is very appealing.

However, the actual article published by the researchers who conducted the trial was optimistic but contained several cautions. The authors noted that surgery dramatically increased the risk of preterm birth and pregnancy complications and had future reproductive consequences for mothers. They also pointed out that while the in-utero surgery group averaged better outcomes at 12 months and 24 months, that some children who underwent in-utero surgery had no better outcome that children who underwent postnatal surgery. It was also unknown how long the benefits from the in-utero surgery would last or if the surgery would have any benefit for bowel and bladder or sexual function in children with myelomeningocele (Adzick, Thom, Spong, et. al., 2011). 

As in-utero surgery has expanded and more hospitals are trying to attract potential patients, the temptation to overemphasize the benefits of the surgery remain. In their announcement of the first in-utero surgery for myelomeningocele in Texas, Children’s Memorial Hermann (2017) stated that the surgery had many risks, but summarized the findings of the 2011 Adzick study by stating “The study found that if a baby undergoes surgery in utero, the serious complications associated with spina bifida could be reversed or lessened with the operation.” While the statement is not entirely inaccurate because the surgery did find a reduced risk for certain outcomes, it is not accurate either since it neglects to point out the limitations of the procedure as well.

Children’s Hospital of Philadelphia (2017) states on their website that the procedure “… is shown to offer significantly better results than traditional repair after birth.” This statement also neglects to mention that some children may receive no benefit from the surgery. Vanderbilt Hospital (2010) has a presentation on their website about Emily Dotegoski, the 19th infant to undergo in-utero repair and the benefits they feel the surgery has had for her. The benefits cited were attending a regular school, getting good grades and going to physical therapy- all of which are normal for a child with spina bifida myelomeningocele whether repair happens before or after birth. Emily can walk unassisted over short distances, but still uses a wheelchair most of the time- also normal for any child with spina bifida myelomenigocele. In the case of Emily Dotegoski, the surgery may have had few benefits over traditional repair, though the outcome is represented as being exceptional and due to the procedure.

While a webpage does not constitute a full disclosure of risks and benefits, the nuances of how the procedure is “sold” to parents is an issue of concern. In utero surgery for repair of myelomeningocele can only be performed between 19 and 25 weeks gestation while diagnosis typically comes at 15-20 weeks gestation. This gives parents a very short window of time to make a decision about in-utero surgery when they are in a very emotionally vulnerable state. For the hospitals that offer in-utero surgery as a distinguishing specialty, it is in their best interest to recruit as many qualifying patients as possible. Complicating the issue further is the fact that no research has yet been able to pinpoint which children will derive benefit from the procedure and which will not, only that the average outcome as measured during 12 months and two and a half years of age is better for children who underwent prenatal versus postnatal surgery.

Prenatal surgery for myelomeningocele falls into a crossroads between beneficence and maleficence because it may benefit some infants but not others and the associated risks of pregnancy complications may harm some mothers and infants but not others. The tolerance for risk and the expectation of benefits may vary from family to family. The important issue is whether parents have an accurate understanding of the risks and benefits when the option is presented to them or if they are consenting to the procedure based on an unrealistically negative perception of postnatal surgery and unrealistically positive perception of the prenatal surgery.

Adzick, N. Scott, Thom, Elizabeth A., Spong, Catherine Y., Brock, John W., Burrows, Pamela K., Johnson, Mark P. , Howell, Lori J., Farrell, Jody A., Dabrowiak, Mary E., Sutton, Leslie N., Gupta, Nalin, Tulipan, Noel B., D’Alton, Mary E., and Farmer, Diana L. (2011). A Randomized Trial of Prenatal versus Postnatal Repair of Myelomeningocele. New England Journal of Medicine; 364:993-1004. DOI: 10.1056/NEJMoa1014379

Children’s Memorial Hermann (2017). Faith: Surgery in the Womb to Repair Spina Bifida. Retrieved from http://childrens.memorialhermann.org/patients-families/faith–surgery-in-the-womb-to-repair-spina-bifida/

Children’s Hospital of Philadelphia (2017). Fetal Surgery for Spina Bifida (Myelomeningocele). Retrieved from http://www.chop.edu/treatments/fetal-surgery-spina-bifida

Children’s Hospital at Vanderbilt (2010). Emily’s Dotegoski, fetal surgery for repair of spina bifida. Retrieved from https://www.childrenshospital.vanderbilt.org/services.php?mid=6296&slideshow_id=88

2 Comments on “How Honest Are Prenatal Surgery Centers?

  1. This article is not without an obvious negative bias and a bias that Fetal centers are only out for money! As a family who was evaluated at one of these fetal center, given all the risks 80%mortality if born at 24 weeks, benefits of both Open Fetal repair and Postnatal repair. The fetal center practically tries to talk you out of FS with the risks. The evaluation is very specific on who can even qualify. Healthiest moms, not prior risks or comorbidities, SB severe enough to have benefits out weigh risks. Chiari II at the least. And if their Hydrocephalus is too great to have any benefit, not a candidate! Our granddaughter’s leaion was L4-S1-Myeloschisis which meant there was no bubble or skin covering the spine. Her prognosis was poor as longer exposure to amniotic fluid would continue to damage her spine and nerves. After days of weighing the definite and serious risks, my daughter chose to give her baby the best chance she could offer. Her baby’s Chiari completely reverse, one of the desired outcomes. She has movement and feeling down to her toes. She is not cathed. Although she was born at 33 weeks, she has thrived. She spent 3 weeks in the NICU for feeding and growing issues related to Prematurity. We have no doubt she has gained positive results from FS. While our babies are “snowflakes,” her future is bright. We know that not all results are the same. We were never promised the moon. They said they saw improvements with the right candidates. My question to this, if you were told you child will be in a wheelchair for the rest of their life or they could walk, but with “sticks” or AFOs, would you settle for a wheelchair? If you had a choice between avoiding a shunt, which often comes with its own set of complications, or having a shunt, what would you opt for? Would you choose possible risks in breathing and feeding due to Chiari or not? We try to do the best for our kids. When given the diagnosis of SB, 67% choose termination!! We chose life and the best life possible for our kids!

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    • Hello Pam,
      I have biases, as do you, which is quite obvious from your response! Both sides are necessary for a balanced view. Your experience does not change the fact that some centers are presenting to the public that the surgery has more certain benefits than it actually does. Even if this is remedied in private with the parents, there is public misrepresentation of the procedure and its potential risks and benefits. Your granddaughter sounds like she has an improved condition over many SB children for now. If you read this post, you should have read where I stated that some children do have improved condition over the average SB child after prenatal surgery. However, others do not. This is why your granddaughter was not given the best life possible, but rather the chance for the best life possible. For other children, prenatal surgery means taking on the risks of premature birth and complications for an outcome similar to that of a child who has postnatal surgery. I have never met any mothers who did the prenatal surgery and regretted it. I have also never met any mothers who did not have the prenatal surgery and regretted it. I think this is because the mothers who chose prenatal surgery know that they held nothing back and took every course of action to try give their child a better condition and the mothers who chose not to avoided exposing their baby to risks for an uncertain outcome. Both are right.

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