Genetic Disorders Study Shows Some Doctors Dehumanize Handicapped Babies
In a touching post on Neonatalresearch.org titled “Our children are not a diagnosis,” Dr. Keith Barrington, a neonatologist and researcher at Sainte Justine University Health Center in Montréal, responded to a recently published study in the journal Pediatrics about families with children who have trisomy 13 and 18.
Those are chromosomal disorders that cause significant neurodevelopmental disability. Fewer than 1 in 10 babies born with them survives to his or her first birthday. Trisomy 13 occurs in about 1 in 5,000 births. Trisomy 18 occurs in about 1 in 3,000 births, and predominantly among girls. Often, the disorders are treated with palliative measures only—that is, patients are made as comfortable as possible, but not given medical interventions.
Barrington was disturbed by the study’s results not because it challenged assumptions about life with such severely disabled children, but because of what the parents reported about the medical establishment’s attitude toward them.
Caveats about the study concern the fact that survey participants were found through Internet-based support groups and Facebook groups dedicated to trisomy 13 or 18. Surveys were emailed to parents of children born with full or partial forms of the chromosomal disorders. Clearly, they might not represent all parents of children with congenital disorders.
More than 330 parents completed the questionnaire. Some had been given a diagnosis before their babies were born, and others had not. So those with a prenatal diagnosis might have had the option to abort, but did not. The study included only parents whose babies had been born alive.
About half of the parents chose palliative care, one-quarter chose limited medical care after birth and one-quarter wanted full intervention. The length of the children’s survival didn’t differ much among all the families.
Among the study’s findings was that the parents who regretted their choices about the extent of medical intervention were overwhelmingly the ones who had chosen comfort care only. Also, the children did show signs of developmental progress, all were able to communicate with their parents at some level and most parents reported their child as being happy.
But most gratifying was that the parents overwhelmingly reported that the experience of living with their disabled child had made a positive contribution to family life, irrespective of how long their afflicted children lived. The fact that their disorder had created substantial financial stress was irrelevant.
Here’s the disturbing part: Although 2 in 3 of the families met at least one medical provider they described as helpful, most had been given misinformation, and many of those who had chosen active care felt that they were judged negatively by providers for making that decision. They reported that providers often referred to their baby in dehumanizing terms, calling him or her “it” or “a T18.” The parents told of interactions with providers who never learned their baby’s name, only the diagnosis.
To a parent, a child is a child. He or she might be brilliant, disabled, athletically gifted or socially awkward. He or she might be gorgeous or homely, able to engage or closed off in his or her own world. A child with problems is no less a human being than one fortunate enough to be perfectly healthy.
Although adults can make honest mistakes because of ignorance or discomfort, anyone with compassion makes an effort to connect with people not as lucky as they. A person who has chosen medicine as a profession and refers to another damaged person by diagnosis instead of name is less a human being than a wad of protoplasm in desperate need of re-education.
As Barrington concludes, the study highlights “the uniqueness of each of these children and the heterogeneity of condition and survival. …[W]e cannot be definite about the duration of survival or the capacities of an individual.”
The researchers concluded that parents who engage with parental support groups may discover a positive perspective about children with T13 and T18 that might stand in contrast with that of medical practitioners.
Here are Barrington’s guidelines for medical providers when talking with parents who have received a diagnosis, prenatal or postnatal of T-13 or T-18. If you’re a parent in this situation, and your providers fail to observe them, let them know of their deficiencies, and seek help from others who are not so afflicted.
1. Don’t say that this is “‘incompatible with life”; it’s callous, and it’s a lie.
2. Don’t say that if they survive “they will live a life of suffering;” parents do think that their child had more pain than others, but they also had many positive times, and their overall evaluation was positive.
3. Human beings are not vegetables. These children are conscious and interact, even if at very limited levels. Carrots don’t.
4. Don’t predict marital disharmony or family breakdown. There is no evidence that it occurs more when a family has a baby with severe impairments. Families find meaning in the lives of their children. Whether those lives are unimpaired or lived with severe impairments. Whether they are very short or not.
5. Don’t suggest that the child is replaceable. If parents initiate the idea that they can have another child, fine, but for you to suggest it indicates that you think this child is worthless.
6. Don’t say that there is nothing you can do for them. There is a lot you can do. Empathy and a positive attitude, finding resources, respite care and enabling appropriate medical care are among what you have to offer.
7. Be explicit about medical decision making; come to an agreement about the limits of medical interventions (if you can’t, then find them another doctor who can); be open to changing the plan as time goes on.
8. Refer to the child by name if there is one. Some doctors ask prospective parents if they have chosen a name, which demonstrates recognition that a fetus has potential as a human being.
9. Recognize that these babies will be loved, cared for and will leave a positive mark on their families.
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