Difficult

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A baby died at the orphanage this past week.

And another one a few weeks before that I just heard about the same day.

The one from a few weeks ago reportedly was a 1 year old boy found dead one morning in his crib.
He had a severe case of untreated Hemophilia A, Factor 8 deficiency.

That’s a bleeding disorder that can be treated with expensive medicine and a kid may be perfectly fine for a lifetime.

The one who just died was a 16 month girl with cerebral palsy and apparently ongoing seizures.

She had been brought in from a community foster home to get better, and spent some days in a hospital.

The orphanage doctors said they had done everything for her, but she was continuing to waste away the past days and weeks.

We had not really been consulted, but poked our heads in to see her the past 2 Mondays when we were there, thanks to a tip from the nurse.

Two weeks ago she was breathing with great difficulty, gasping, and horribly emaciated.

Her (cloth) diaper was absolutely drenched.

A caregiver came in to feed her a bottle of formula, which she continuously gagged on due to rapid breathing.

She was lying on a newborn bed, too small for her outstretched legs which had a dent on the ankles where they lay on the hard plastic edge of the bed.

My Chinese-American pediatrician colleague and I obtained a very sparse amount of information from the house doctor about her situation, but basically all they could do at  the orphanage was a complete blood count so any kind of etiology or diagnosis was severely hampered.

We recommended some other tests to look for the reason for the seizures, but it was not going to happen.

The following week, she was just bones covered with skin, nearly comatose.

We found a person willing to emergently hospice-foster the child, but by the time our team leader spoke with the orphanage director, the baby was dead.

The orphanage, although in decent shape overall due to a large NGO with caregivers working there, does not do much to work up kids for diseases.

Finances, we’re told.

Also, the doctors have variable levels of training, so all they can think of to do may not necessarily be all that can be done.
Many of the less recent grads have only had a little bit of schooling beyond high school, and get a job at the orphanage.

Some of the newer grads have a bachelor’s level training.

It’s hard to think about deaths that could possibly be prevented.

Many resources, tests and most medicines and treatments are available here in China.

You just have to know how to get them.

So, again, it all goes back to continuing to develop relationships with these orphanage doctors who make the call.

We are visitors, allowed to come in and examine select kids and provide pediatric teaching opportunities for our residents, but the local docs still keep a wide berth.

One of our primary goals as the attending docs is to foster good relationships with these doctors to establish more of a level of mutual trust and collegiality, so that perhaps we can have more collegial discussions about complicated children.

In the meantime, pause and say a quick prayer for the millions and millions of orphans all over China, and all over the world, who may be dying prematurely, needlessly.

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