‘Beautiful embodiment of joy’: Ethicist describes determination of families raising kids with disabilities

A recent episode of the “Brave New Us” podcast hosted by Samantha Stephenson featured an interview with Dr. Erica Salter, an associate professor and director of the Healthcare Ethics Ph.D. program at St. Louis University. The podcast discussed the complex ethical issues that arise when parents receive poor prenatal diagnoses such as Trisomy 13 or Trisomy 18.

While Dr. Salter noted that “individuals with these diagnoses have much worse outcomes than individuals with Down syndrome [Trisomy 21]” and may “die within one year of birth,” some surpass all expectations. “Traditionally, Trisomy 13 and 18 have been considered, and have been taught in medical school, to be lethal diagnoses,” Salter said, “meaning these kids die and invariably they die young. So, when they’re born, basically [it is assumed] we shouldn’t offer advanced medical treatment to them; we should simply place them in their mother’s arms and let them pass away peacefully right after birth.”

But Dr. Salter noted that families of children with Trisomy 13 or 18 “want to fight for as much life as they can on behalf of their child” despite external assessments that conclude their children may never see, hear, speak, or do the same things children without disabilities do.

READ: Mom of baby with Trisomy 13: I have ‘gratitude for being chosen to be Gabrielle’s mother’

Salter pointed out the determination of many families to spurn the idea of death as the better option for their children. “When you talk with these families, if they’re able to, say, get the heart surgeries and take the kids home, she said, “these families sometimes… experience very fulfilling, vibrant, happy lives with their kids. These sweet kiddos become full members of their family.”

“They’re able to participate in family life, not in the typical way, but in a way that I think a lot of parents would say is ‘refreshing’ and really opens their eyes to new ways of existing in the world,” she added. “… [P]arents are notoriously good at finding the value in their own children, seeing whatever spark of beauty or joy or God’s image that they can. So, look[] at these kiddos through the eyes of their parents, that are able to see them and say, ‘Gosh, I know you see a kid that can’t eat or talk or sit up on their own, but what I see is this beautiful embodiment of joy. Every time she smiles at me, we feel a new sense of God’s love in our family.'”

Dr. Salter believes this sort of perspective on children with disabilities is sorely needed, pointing out that when it comes to the way persons with disabilities experience the world around them, there is a great deal we do not know. “… [M]aybe a baby with Trisomy 13 or 18 actually has better access to God’s heart, because there aren’t as many things in the way distracting him or her. We just don’t know. I think it really calls us to respond in humility to these kiddos and their families, and [to] listen to those who are experiencing it firsthand.”

READ: ‘Incompatible with life’? People with Trisomy 18 are proving doctors wrong

In response, the podcast host alluded to the negative barrage of information families typically receive in the face of poor prenatal diagnoses. “If all they have access to is the medical narrative from doctors, who never see the family life of these patients, how can they really even make a choice? For parents choosing whether to pursue aggressive medical treatment, or whether to hold their kids and allow them to pass away peacefully, how can they really make an informed decision without knowing and hearing these stories?”

The answer is, of course, they can’t. Parents need real, accurate, up-to-date information on any and all conditions with which their children are diagnosed. They also need access to families raising children with these conditions. Life-or-death decisions should never be made based on limited or one-sided information.

Live Action News has frequently profiled stories of children with Trisomy 13 and Trisomy 18. Sharing these stories can show parents that there are options for them and their children. Organizations like Be Not Afraid exist to come alongside families experiencing a prenatal diagnosis to help them make individualized plans.

No matter how long they survive, every child’s life is valuable. That value is not tied to what we do, but to who we are.

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