Surgery in the Womb for Babies with Spina Bifida

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william_e_may.jpgSurgery of this kind in the 1980’s
Spina bifida is a developmental congenital disorder caused by the incomplete closing of the embryo’s neural tube. Some verterbrae overlying the spinal cord are not fully formed and remain unfused and open. This can cause long term mental and physical crippling to the child and at times death in the womb due to the build up of fluid and swelling in the brain.

In the 1980s it was possible, using prenatal screening, to detect neural tube anomalies such as spina bifida and then to perform a therapeutic action on the developing unborn child in the womb.  The most common procedure to treat this anomaly was to insert a shunt  into the child’s brain to drain the fluid thus releasing the pressure and providing great benefit to the child’s neurological and physical development.  In fact, at a hearing at the US Senate sometime in the mid 1980’s, sponsored by then pro-life Senator Gordon Humphrey a couple and their physician, with the child—at the time a born baby girl resting on her mother’s  lap—gave testimony in which they described the wonderful surgery that had been done on the child while still in the womb after a prenatal diagnosis had shown that she had suffered from a neural tube defect and that fluids were building up in her cranium, exerting pressure on her brain. This timely intervention was successful in minimizing the harm this girl suffered after birth, and the surgical intervention posed no serious risks either to the child or her mother. The child still needed to have a shunt to remove fluids from her brain after birth, but she did not suffer debilitating mental deficiencies and other symptoms associated with spina bifida.

Surgery of this kind today
Beginning in the 1990’s it became possible to perform surgery of this kind that could close the hole in the spinal column and eliminate the necessity of having shunts. Recent studies, reported in an article in the New York Times, “Risk and Reward in Utero” by Pam Belluck (http://www.nytimes.com/2011/02/13/weekinreview/13belluck.html ) show that “Fetal surgery… made babies more likely to walk and less likely to have neurological problems or need shunts to drain brain fluid.”  The surgery, however, poses serious risks for the child in utero and risks for the mother. It poses the risk of causing the child’s death, and although there is a greater chance for the child to survive the procedure than to die as a result of it, the risk of death remains significant. Note that there is a “greater chance for the child to survive than to die.” Thus if parents choose to allow their unborn child afflicted with spina bifida to undergo the surgery in utero that will completely cure him of that serious and crippling malady their choice is morally good because the benefit conferred is significant and far more probable than that death  of their child would be the outcome of the surgery.

The N.Y. Times article also cited Dr. Jeffrey Kahn, director of the University of Minnesota’s bioethics center, who said that with this surgery, “Some people are accepting risk for the benefit of those who will come after them.”  If this is the reason parents accept this risk for their child, then the parents are making a wrong moral choice. It is unethical for parents and/or guardians of non competent human persons to “volunteer” such persons for experimental medical procedures that may indeed kill those highly vulnerable persons. Moreover, those responsible for the care of non competent persons, whom the late Paul Ramsey called “voiceless patients,” have also the duty to treat them as persons, equal in dignity, and thus are not to be used as an instrument for the benefit of others.

Pro-life doctors and parents and surgery of this kind
On the website for pro-life doctors (http://www.physiciansforlife.org/content/view/258/43/ ) they report favorably on this kind of surgery performed in 1999 on Samuel Armas, son of Julie and Alex Armas, when he was only 21 weeks old, the youngest unborn baby to have this surgery up to that time. Julie and Alex lived in Georgia, where babies with spina bifida are routinely aborted. But, their report continues: “Fortunately for Samuel Armas, the option was not an alternative for the Armas family. ‘We have always believed life begins at conception, and we never wavered, not even when it was actually our decision to make and not mere words that we say,’ Julie said. ‘My husband’s first words after we received the news were, “Well, we wanted a baby and this is the one God had chosen to give us.’"”

At the end of their report the doctors quote Julie as follows: "The photo [a video of the operation showing the baby grasping the finger of the surgeon] reminds us that my pregnancy isn’t about disability or illness…it’s about a little person. That’s what it’s always been about. That’s what the media elite wants us to forget. And, that’s why they don’t want you to see the picture. The photo should be televised across the nation and published in every newspaper in the country. It won’t be because the media does not want Samuel’s photo to be shown; it is much too graphic a reminder that a real baby is growing in the womb. It is not a glob of tissue, or a ‘product of conception;’ it is a living soul.”

This is obviously the reason why the pro-life doctors posted the story on their website. In their report they also quote a very revealing statement made by Mark Blinton, a specialist in bioethics at the Vanderbilt University’s medical school where the operation occurred. Blinton interviewed parents of the children who would receive the operation to gain their consent to proceed with it. In an interview he had with USA Today, Blinton declared in responding to the question, “Why would parents decide to risk the life of their child in a surgical procedure where the risk of death far outweighs the benefits?”, "There is something worse than death for their children. The thing that is worse than death is that my child will not be able to be successful and will suffer in his or her own recognition of that. That is unbearable for a parent."

Julie and Alex Arras chose this surgery for Samuel because they loved him and believed sincerely that it would not kill him— they (and the pro-life doctors) definitely did not share Blinton’s belief that death is better than life with a disability. Moreover, as the N.Y Times article declared, the chances that the child will survive the surgery are greater than the risk of its causing his death. Thus the choice of Julie and Alex to have their child receive this surgery was a morally justified one.

(c) 2011 Culture of Life Foundation.  Reproduction granted with attribution required.

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