Sunday, February 01, 2009

Introducing Samuel Mann. Or, God & probability, part two

This is Samuel Mann, who like my son Eric was born with a fatal condition, thanatophoric (ie. "death-bearing") dysplasia. Samuel is a dwarf, like Eric. Thanatophoric dwarfism is always fatal. The chest cavity is too narrow to support normal lung development. Such babies cannot breathe on their own. They require constant support from a respirator.

But Samuel has amazed his doctors. In the second photo, he is breathing on his own. He can breathe on his own for up to an hour.

Samuel's mom Evelyn supports Samuel in his life, like I supported Eric. Sun Hudson's mother, in Houston in 2005, wanted to support her son too. But Sun, who was a thanatophoric dwarf, lived in Texas, where chapter 166 of the Texas Health and Safety Code allows life-sustaining treatment to be withdrawn from a pediatric patient over the objections of the child's parent. The doctors did not deem Sun's quality of life good enough to continue treatment. Sun's mother had to suffer the heartbreak of watching her son die from lack of a treatment that she, as guardian, wanted to continue.

The docs faced the same questions I did when Eric was diagnosed with a condition that carries the concept of death within its very name. How do we respond, what can we hope for, when a person's struggle to live is going to inevitably end in death?

I realized in 1983, trying to figure out how to respond to Eric as a mother, that his condition, ontologically, was no different from my own. I too am struggling to live against the inevitability of death. So are you. So are we all.

It is a joy for me to be on Evelyn Mann's mailing list, and to receive periodic updates on Samuel's progress. It is so obvious that the exchange of love in that household transcends the bounds of fear and pain over Samuel's condition. It is obvious that faith, prayer and hope have given a far different outcome than that predicted in the medical literature for thanatophoric dwarfs.

"God may perform miracles by manipulating the probability allowed by physical laws."
- The String Theory and Miracles by Frank Lee.

I thought that was true when I reflected on my grandson Owen's recovery from brain injury, and the possibility of miracle there. I think it true about Samuel Mann.


Anonymous said...

My nephew was born with thanatophoric dwarfism, but we were only able to keep him for about 45 minutes before God took him back to heaven.

Its encouraging to know of other families who have loved these special little ones. Thanks for sharing :)

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