Posts Tagged ‘birth defects’

Sick baby updates

In this post I first talked about interpreting at the hospital for a family whose baby had a severe birth defect of the liver: biliary atresia, or, in his case, the complete absence of a bile duct. I reflected on my gratitude that my daughter was born healthy and has remained so.

In this post I updated the story of the baby with the liver problem.

On Sunday I helped this family out again. The Kasai operation their child underwent seems for the time being to be a success; the baby was discharged and will continue to be tested to make sure that bile is flowing properly. Please keep this baby in your prayers.

On Monday–it seems about two weeks ago–I helped another family. Their baby was just five days old but had to undergo open heart surgery because of hypoplastic left heart syndrome, a birth defect that leaves only half of the heart able to pump. Until the early 1980s, this birth defect was 100% fatal. Now, however, a series of three surgeries before 18 months of age can keep the child alive and even fairly normal as far as activity goes. The baby underwent the Norwood procedure, which sounds just wickedly complex from the Wikipedia article linked for your reference. Please keep this baby in your prayers as well.

Doing my job, of course, requires that I meet the surgeons who have performed the operations. Here they are, who have spent the pressured and long hours in the operating room, working on the tiny, vital parts within tiny bodies. When I put new windshield washer fluid in my car I splash it everywhere, but here are people so brilliantly skilled, who have altered the human organism to save life, creating pathways that were not there by means of what the body has to offer: intestine, blood vessels.

There is no blood on gowns, no drama of the OR attached to them. The cleanliness and calm they have is uncanny. In both cases, the majesty of success was theirs. The parents are grateful for the news. There is an intermingling of vibrations between the giver and the receiver, related yet distinct, like a river flowing into the ocean: both are happy that the child will live, but one had to make it happen; one had to prevent the worst from happening, at least for today.

I lived in the parents’ country for eight years. I have seen Japanese people laugh, cry, hope, and despair in countless situations. Fate chose for these two families to have children in the United States, in Indiana, how far from home, far from the morning NHK news and the train stations with their kiosks selling everything and miso soup and tatami mats and the black spider web of power and phone lines that no one thinks about until they are seen throughout the city and everyone forgets until they are seen again. Fate chose to give their children horrifying, burdensome birth defects–nothing to be fixed, sewn up, taken care and dismissed: no, in an instant they took on a life of thinking about, dealing with, and paying for them. These things.

Japanese people in the waiting room, and somehow I’m there with them.

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