Posts Tagged ‘biliary atresia’

In my last post about the sick baby with biliary atresia, I felt that things were getting better. And the good news is that, since then, things for our little friend have only continued to improve.

I last saw (and interpreted in the hospital for) the family on May 15, at which time the news from the doctors was more or less positive. There was an extensive discussion of the genetic disorder that the child may have, as well as its nature and cause (there are no definite answers yet). But his bilirubin was lower, indicating improved liver function.

The family returned to Japan at the end of May, and they’ve stayed in contact with me. The little one’s bilirubin has dropped even further, and photos of him show him smiling just as brightly as when I last saw him in person. My intuition tells me that things will continue to go well!

For those new to my personal blog, by profession I’m a writer and translator/interpreter. Doing medical interpretation does not bring in big dough, but it does give me the opportunity to help people, something I think I need to do more of in my life.

In my last post, I was somewhat despondent about the baby with born with a birth defect of the liver (biliary atresia). The doctors (who have a tough role to play here; I’m not complaining about them) were delivering bad news at variable timing and in a variety of forms. It seemed the child had a rare genetic disorder that could quite possibly be fatal.

Today, I was called into the hospital again. A very good doctor packaged the information differently, and the situation became much more clear. The baby has poor muscle tone (caused by a developmental problem in the brain) yet good muscle strength. Despite his having a probable brain issue, his cognitive development seems good, as does his development overall. Perhaps the disease will be fatal–perhaps not. Perhaps there is no disease. Perhaps it will get better over time. Who knows?

We went from negativity to ambiguity–a marked improvement in information health.

The baby has a lot of light. He smiled at me, laughing with joy at my smile. He is pulling the world toward him, into his being. I can’t believe that he will give up or leave anytime soon. It just doesn’t feel like his fate.

The baby was discharged from the hospital today. The family intends to go back to Japan in May. Thanks for any prayers you can offer; I do think they have helped immensely thus far!

In my last post on this topic, I said,

To me the child’s life force seemed strong, almost as if the whole liver deal is just an annoyance, an inconvenience to him.

Maybe I was a wishful thinker. Maybe I was right.

I was back in the hospital with the family yesterday. The doctors now believe that, unrelated to his biliary atresia, the baby has a rare inherited metabolic disorder. They said that there is only a 50% chance of ever learning what disease it is. The disease could be fatal in its own right or be fatal by preventing the baby from getting a liver transplant, which he will eventually need. The doctors have begun a series of tests, and it may take up to six months to identify the disease or run out of diagnostic options.

For the baby’s sake, I am still hoping that I was right the first time. I refuse to give up hope.

Here is the previous post on this child, who is now back in the hospital until the 17th. The reason for the stay is cholangitis, an inflammation of the bile duct, and the baby now has a PICC line in for treatment with antibiotics. The Kasai procedure has been a moderate, but not a complete, success, and the doctors now say that the goal is to have the baby grow as much as possible so that he can have access to a bigger donor pool when the time comes to have a transplant, which is now inevitable (a bigger child can use a whole liver instead of just a piece of one).

The family is planning to move back to Japan in May for good. Even though they have “good” health insurance here, they are facing the BS that always comes with our system. For example, the insurance company wasn’t going to pay for home nursing care of the PICC line, so–like magic!–a longer stay in the hospital because “necessary,” which the insurance company will pay for. So it goes in our system: the insurance company thinks it’s saving money but ends up costing itself more. Our system is full of waste and hurts people every day. It must change, it will change soon.

To me the child’s life force seemed strong, almost as if the whole liver deal is just an annoyance, an inconvenience to him. My intuition is that he will get the liver translplant eventually but will continue to bulldoze through life and not let his liver rule his existence.

First post in which I 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

Second post with update.

Thanks to everyone for the prayers and moral support along the way. I interpreted for the family for the baby’s checkup on Friday. Thus far, everything is going well. It will take about two more months or so to confirm that the Kasai procedure was a success. This family has been so kind to me. They bought my daughter a beautiful outfit from Gymboree, which she loves.

I have not heard anything more about the family whose baby was born with a birth defect of the heart. I assume at this point that no news is good news.

Thanks for your continued prayers for these children. I will provide updates as I learn more.

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.

Hospital interpretation for two Japanese families.

At St. Vincent’s on 86th, both kids have pneumonia and asthma. The four-year-old boy gets to leave with one inhaled drug. The girl is worse and stays in for several more days. She leaves with two inhaled drugs and an oral steroid. Again and again and for several days I go over the doctors’ instructions about which drug is which, what they do. This family will be okay: the asthma is going to be a pain, but there is the hope that it won’t affect the kids that much in the future; after all, it was only after they had gotten really sick that it was noticed they had the condition.

At Riley closer to Downtown, a fragile-looking eight-week-old baby has jaundice. He also has two holes in his heart, but they aren’t the immediate worry. The parents have just become parents, but their reality is a thick pack of problems, actual and potential, with obscure names. The doctor fears biliary atresia: no path for bile from the liver to the intestine, treatable with a Kasai procedure (a Japanese doctor’s discovery might save the infant), but many thus treated still need a transplant later. The father’s face grows dark from the burdens the future is pressing upon his child, his wife, him. But an ultrasound reveals that a heart hole has closed up, and suddenly the biopsy is saying that atresia seems highly unlikely. Things will probably be okay. Today I am going back to interpret for another test, and I hope the okay-ness progresses.

Japanese people quite often possess a wonderful stoicism, and it’s painful for me to see the pain and fear ready to breach the barrier of strength. I want to do something to help, and I end up being a kind of therapist. I explain that, in the US, doctors feel obligated to describe every risk, to consider every possibility, no matter how slight or remote. I tell them I’m praying for a swift recovery.

Riley Hospital for Children is big. All around me are children whose diseases seek to define them or even take them from the world. I pray, “Let this cup pass them by,” but my intention is so small in comparison to those of the parents, the doctors, the nurses, and the children themselves.

My daughter Ellie is happy and healthy. This is something I have never taken for granted and never will. She’s in Japan and I miss her.

UPDATE (12.18.08)

I interpreted for the family whose baby had the liver problem again yesterday, and the plan was to discharge them today. The doctor thought that the child did not have biliary atresia, liver function had been compromised by a virus, and time would fix the problem. I’m hoping she was right!