A Don Berwick story: This is the evidence you’ll need

John Sundman and Betty Burton tell about their son:
Jakob was born two years after our daughter.  It was pretty dramatic – the doctors did these tests and looked at the results and then asked Betty and me if we wanted to buy burial insurance!  It was really tacky!

He was a preemie, six weeks early. He was pretty big, at five pounds, seven ounces, so they were wondering whether we had gotten the date of conception wrong.  But his earlobes were translucent, and there were other signs that showed that developmentally he was not too far along. His breasts weren’t formed; he didn’t have nipples. His ears were not all the way formed.

In his first year, he was sickly, and didn’t put on weight.  He didn’t meet any developmental milestones.  We were aware of that because we were not totally inexperienced parents; we’d had another child already.

Even accounting for that, he was just a lump. When I was changing his diapers, I said to Betty:  I don’t think this baby can see.  He was six weeks old at the time.

We went to a pediatric ophthalmologist who diagnosed him with strabismus (lazy eye) and nystagmus and said we should patch one eye.  As an infant, he was sensitive to light, so it was hard to look in there; and the doctor can’t really tell.  He really needed to see Jakob’s eyes under anesthesia, but he was too weak and sickly; so the anesthesia could kill him.  That went on for a long time.

We went through a couple of doctors who were just arrogant.   One said the main problem was a nervous mother.  But Betty had worked on her PhD in molecular genetics at Purdue and used to teach pre-medical students, so she was not intimidated.  She’d say, I graphed his weight; here’s the normal distribution; he’s a standard deviation below; he’s not growing. 

He didn’t show any interest in anything for a year, not in toys, and didn’t reach for anything, he was just kind of there.  Then in a toy store once, he reached for a ball, so I bought that thing so damned fast!  You want it, kid, it’s yours.

We had to take him for medical care from our home in Westborough to Harvard Community Health Plan in Harvard Square in Cambridge.  That’s a long shlep to see the doctor!  Then we moved even farther away to Gardner, 57 miles away from Boston, to a much better house. 

They put Jakob under anesthesia and learned that his retinas were all damaged, with lots of scarring.  They did a blood test that showed toxoplasmosis, a parasitic disease you can get from cats.  That’s why they say to stay away from kitty litter.

The classic hallmark of that is that it almost always attacks the eyes and the optic nerve.  It attacks the central nervous system. It happened when he was a fetus, they said, telling us that the infection is over now, that we should take care of him and he would be fine. 

Betty had a friend who was the head of nursing at UMass Worcester, with access to their medical library.  This was before the Internet, when medical information was hard to access.  It was like the Man from UNCLE. She found a book, Infectious Diseases of the Fetus and Newborn, a 1200 page textbook with a 90 page article on toxoplasmosis.  Betty was reading it to me until 4 a.m. in bed, and said, Oh my God, John!  Two-thirds of infected babies spontaneously abort.  Most of them have mental retardation, and all of them have eye problems.  There’s scarring of the brain, since the organism eats the brain matter.  It can go into the heart and lungs too.  

Forty percent of the world population adults have toxoplasmosis, but if you get it as an adult, your immune system takes care of it.

Betty found an article by Jack Remington of Stanford University Medical School, who said we CAN do something.  We had changed doctors a couple of times, since we were just being jerked around. This was the article that was in the textbook

The doctors did a CT scan and the report said Jakob had hydrocephalus. So we went to a pediatric neurosurgeon, the best in Boston.  He told us, I can’t operate for reasons A, B, C, and D.  He’ll just be a vegetable, so just institutionalize him and have another child. We were outraged! 

We did get a second opinion which said the baby cannot be operated on for hydrocephalus, but it’s not causing any problems right now anyway.

Betty got in touch with Jack Remington; who said, We’ve been treating this in pregnant women and newborns in France, on a drug regimen they’d developed.  Dr. Remington was pushing for wider adoption of it in the U.S., but the FDA has not approved the medicines for this purpose, so we would need a doctor to get a waiver to use that protocol.  Dr. Remington said he would then guide our doctor through the protocol.

Jakob was now 18 months old, and somewhere along the way, we had had it.  We wrote to the head of Harvard Community Health Plan saying, Your obstetrician screwed up by missing the diagnosis even though Betty reported all the signs while she was pregnant. 

All three doctors were condescending; we only liked the ophthalmologist.  But the lawyers said the only one we could sue was him!  He was the only one who had done anything good for Jakob.

To placate us they assigned Don Berwick, because we had good reason to be angry.  He was the eighth pediatrician we’d seen.  He was great.  He listened to the whole history. Betty met with him for an hour and a half; he made sure he had the whole picture.  He didn’t interrupt, or tell us where our thinking was wrong, or that our facts were wrong, like other doctors.  He said, Let me talk to Jack Remington. 

They had Jakob take two powerful neurotoxins - drugs that were good at killing toxoplasmosis.  The first is pyrimethamine; the second is sulfadiazine, to kill the organism; the third part of the cocktail is folinic acid, which mitigates the toxic effects of one of the other drugs.

They got it all worked out.  Don was about to go on vacation out of the country, so he left it with a woman doctor who was the head pediatrician. He was a pretty young doctor at the time in 1983. 

So we start the drug therapy.  We’re about four days into it and suddenly Jakob is shaking on the floor, having a seizure. I call an ambulance.

We found out there were two things going on:  the baby’s weight was said to be pounds instead of kilograms, so they were basically giving our 7 lb baby [???] the dose for a grown woman.  The overdose had caused the seizures.  On top of that, the doctor had prescribed folic acid instead of folinic acid, so there was nothing to counteract the chemo agent. 

After his vacation Don came back and gave Betty the medicine bottles, saying we should hold onto them.  The implication was that if we wanted to sue them, we would have this as evidence.  Betty left with the bottles that showed the errors by the prescribing doctor.

For next six months, we had a doctor we could trust, on the same page with us.  He took charge.  Jakob started to do better. 

He started going to early intervention.  When he got to be college age, he attended classes at Bridgewater State College.  Now, at age 31, he has organized people to help in food distribution.  His vision is poor, but he can read normal-sized print.  He calls it “Facebooking” because he has to hold the book so close to read.  I’d like for that doctor who said he’d be a “vegetable” to see him now!

Betty and I were very happy with Dr. Berwick's medical care of our son and indeed of our family. We do believe that he saved Jakob's life, for if Jakob had not been treated we're sure we would have lost him to the disease. And Don was always kind, thoughtful, humble, hardworking, and clearly motivated by a love of children and of ending or reducing suffering.

Thanks to John and Betty Sundman for sharing Jakob’s story. 

Read another story about Don Berwick.