In the case study, two parents, Sarah and Mike, struggle with a medical decision regarding their recently born son, Baby John Doe. Baby Doe was born with a severe case of spina bifida, a condition that results in the spinal column not properly fusing during the development of the fetus. In his case, part of the spinal cord actually protrudes from his body. Due to the severe level of the baby’s spinal bifida, the child likely will not have any control over his bowel and bladder functions. The baby will also likely be paralyzed below the waist and require movement assistance. Individuals with spinal bifida are also at extreme risk for infection. The child will require a lifetime of assistive care. The parents are offered the opportunity for the physicians to surgically close the spinal opening on the baby’s back.
Furthermore, the physicians are recommending the placement of a shunt to assist in the drainage of cerebrospinal fluid (CSF). Since the CSF currently is not draining properly, the baby is suffering from swelling and increased pressure in his brain. This increased pressure will likely lead to additional brain and spinal cord damage. The physicians inform the parents that without the operation, the baby will die. However, there are cases of survival without the necessary surgeries. In these cases, the lack of operation results in worse health and mental outcomes for the child. The parents do not know if they can care for the child and consider not having the operation. This is the wrong choice.
While the parents are morally, ethically and legally the baby’s guardians, they do not have the right to refuse their child medical treatment to benefit his health and well-being. Yes, the child will have a lifetime of medical needs and conditions. However, individuals with spinal bifida, like all special needs individuals, can lead productive and happy lives. Their child, unfortunately, was born with a myelomeningocele, the rarest and most severe form of the defect. The child will require a lifetime of medical care even with the operation (“Spina Bifida—Topic Overview,” 2011). Furthermore, if the refuse the operation for their son and he does live, his condition will likely be significantly worse than it would have previously. This is not fair to potentially condemn the child to a greater level of cognitive impairment for his life. The placement of a shunt would help reduce the pressure in the baby’s brain by draining the CSF that is building. If this pressure is not relieved, the baby would indubitably endure additional brain damage, leading to increased cognitive impairments.
The concern of the parents stems only from their concerns regarding the lifetime care of their child. If the child survives without the initial surgeries, the child will most certainly require significantly more care than he would need if he received the surgery. Legally and ethically, parents are considered the best individuals to make life and death decisions for their children. However, the presumption stems from the “consensus in both ethics and the law that parents are usually the parties who have the strongest interest in ensuring the well-being and health of their children” (“Adults Refusing Treatment for their Children,” n.d.). This presumption requires that the parents are ethically making the decision based upon the best interests of the child, not themselves. However, that does not appear to be the case in this tragic scenario. The scenario does state the parents are concerned regarding the very likely difficulty the child will encounter throughout this life. However, it also states that the parents are concerned regarding their ability to raise and care for a child with such significant special needs. By all means, the special needs of such a child places emotional, physical and financial strains on a family. Yet, this is not an adequate, acceptable or ethical reason to deny a child the right to life.
Furthermore, if the baby survives infancy without the surgeries, the difficulties he will encounter will be increased as a result of the lack of proper medical care. If the parents were only concerned about the future difficulties their baby would face, they would likely want to utilize all potential means to reduce these future difficulties. This concern would allow the necessary surgeries to proceed. The surgeries would reduce the baby’s risk of future infections by repairing the significant opening in the baby’s spinal column. It would also include reducing the pressure on the baby’s brain and allowing proper drainage of the CSF. If the parents were merely concerned about the difficulties they would face as parents of a special needs child, they would refuse the surgery. This would also, unbelievably, include hoping that the baby would not survive infancy without the surgery. This is an appalling concept. If they are willing to allow a child with such difficulties die, one also must question why Sarah did not obtain an abortion. Spinal bifida shows up on routine ultrasound scans of the fetus. If the concern of Sarah and Mike was to prevent the future suffering of the child, an abortion may have been the truly ethical choice on the part of Sarah and Mike (Carpenter, 2011).
If the parents honestly believe they cannot care for a special needs child, either financially, physically or emotionally, they have other options. They could place the infant up for adoption or turn the baby over to the state’s custody. If they do not wish to relinquish custody of their baby, they could still place the baby in any number of facilities designated for the care of special needs children and adults. Obviously, as a child with disabilities, the parents and the child would qualify for various programs meant to assist with the financial burdens of this care.
The child also does not have to have a poor quality of life. By all means, the child’s quality of life would be diminished compared to a healthy child. However, the child may still appreciate the opportunity to enjoy life to his greatest capacity. It is important to ensure the greatest quality of life for the baby. This requires the parents to consent to the surgery.
- “Adults refusing treatment for their children.” (n.d.) University of Chicago College of Medicine. Retrieved June 29, 2013, from: http://www.uic.edu
- Carpenter, S. (2011, May 19). I saw my son’s bleak future and knew I had to abort him. Retrieved June 29, 2013, from: http://www.dailymail.co.uk
- “Spina Bifida—topic overview.” (2011, March 11). WebMD. Retrieved June 29, 2013, from: http://www.webmd.com/parenting/baby/tc/spina-bifida-topic-overview