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Love in Extreme Hardship

by Grattan Brown, STD, and Michael Egnor, M.D.

Caring for severely disabled kids takes heroic efforts, especially on the part of the parents. No one wants to force such suffering on a child or their family and community, but this scenario is one of the most powerful pro-choice arguments. If you can abort the pregnancy early on and relieve everyone, including the child, of suffering, then why would you not do it? But even this hard case is not so easy.

Avoiding those difficulties by ending the life of a disabled child in the womb amounts to an act of killing. What else can you call arresting the development of a human (embryo, fetus, child) who would be born? People who claim to protect human rights cannot protect only part of life. The fact that the child would suffer quite visibly and require the care of many people does not make deliberately ending their life any different than ending the life of a normally developing human being.

The problem is not the burden of disability but how human strength, weakness, and social organization meet the difficulties of care. There are two intertwined problems. A severely disabled child puts people into circumstances that make life extremely difficult for them. It feels uncharitable to allow those circumstances to continue. On the other hand, it also seems uncharitable to end the life of the child whose disability causes those circumstances.

Hard cases like Dr. Michael Egnor’s below show how great those difficulties are. But this story also tells us about the community that emerged when one family decided to give birth to and care for their severely disabled child.

The Hard Case

David was born with Down's Syndrome and hydrocephalus, which don't generally go together. Most of the time kids with hydrocephalus are quite functional. They go to school and live pretty long lives. But David was so disabled that he was never able to even sit up on his own or talk or feed himself. He lived to about the age of 10 and required constant care.

His parents were middle-class working people. They had other kids, and they cared for David in their home most of his days. But he was in and out of the hospital, and it wasn't uncommon for him to be in the hospital for a week or two at a stretch. If he got an infection, he could be there for a month. That’s tough on the family, too, because someone has to be there in the hospital with the child.

I wouldn't normally be involved with a child with Down’s, but I got involved because of David’s hydrocephalus. Follow-up visits were typically once a year, but I saw him a lot more than that. I must have performed at least 50 procedures on him myself. His hydrocephalus caused all kinds of problems, and he needed his shunts revised a lot. He was in the hospital for all kinds of medical issues, including heart issues.

When it came time for the funeral, it seemed like the whole town turned out. There was not enough space, and people were spilling out into the hallway. Some were family and friends. Others were people from the hospital. The pastor leading the service had gotten to know David and his family very well.

Toward the end of the service the pastor said the natural thing is to think that because of his handicap, he was never able to do things that most people can do. That's not completely true. He looked out at the crowd and people spilling out into the hallway and said he would doubt that when any of us pass away, we will pack this room and have people spilling out into the hall. David brought people together and perhaps that was his purpose, even if he was hardly aware of it. As far as accomplishments go, he brought people together better than any of us will in our lives.

The Suffering and Benefit of Disability

With such an inspiring message, it is easy to downplay the suffering of the child and the family. That downplay makes it easier to argue against abortion, but you end up overlooking the sheer number of people whose strenuous efforts it takes to care for a child like David.

The pro-choice movement will say “Well, it's good that that family had that choice. They cared. They spent a decade of their life and a lot of money caring for that child where other families would say it’s too much. People should have the choice not to spend the time and the money.”

But this pro-choice argument is too simple. When you focus on the suffering of families like this one, especially their child, it is easy to despair that any good would come of it. That makes it easier to argue in favor of abortion. But the focus on suffering and choice leads you down a dark road. You could make exactly the same argument after David was born. This baby at home has so many problems that it would be better off without them. You can also turn extreme cases like this one into a fearsome expectation, exaggerate the typical burdens of disability, and eliminate children who would live long lives with disabilities but good health.

Reflecting back on this boy and his family, here is what stuck with me. There's tremendous suffering. It can be really, really difficult. But I have never encountered a family who told me that they regretted caring for their child. If on day one, they had known what suffering was coming, they might have been overwhelmed. And if on day one, they had known the unique blessings the child would bring, they would have been encouraged. But we cannot know either one in advance, and I'm pretty sure just from knowing this family that if they had to do it over again, they would do just the same thing.

Browse all of the stories here.

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Disclaimer: The views presented in the Rehumanize Blog do not necessarily represent the views of all members, contributors, or donors. We exist to present a forum for discussion within the Consistent Life Ethic, to promote discourse and present an opportunity for peer review and dialogue.

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