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. [explain in a phrase] 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.
Have a Story to Tell? Had a medical error?
Frustrated with a health problem?
Friday, August 29, 2014
John Sundman and Betty Burton tell about their son:
Thursday, February 28, 2013
I recently scanned the literature for the Society for Participative Medicine, finding these key conclusions:
Domain 1: Patient Experience
Participation by inpatients protects against adverse events, reducing them by half (Weingart et al, 2011).
Multidisciplinary collaborative patient rounds have created a strong trend of overall decreased mortality in New Hampshire's Concord Hospital (Kendall, 2003).
A medical home for children with special health care needs reduced hospitalization by more than 20% (58% vs. 43%), and nearly cut in half the number of parents missing 20 days or more of work (26% vs. 14%) (Davidson et al, 2004).
Patients who participate more actively in physical therapy after hip fracture achieve 25% more of their self-reported pre-fracture function (Talkowski et al, 2009).
Domain 2: Health Literacy
Interactive computer based support systems have positive effects on knowledge, social support, and clinical outcomes (Coulter and Ellins, 2007).
Enabling patients to see their doctors' progress notes in Open Notes led two-thirds of patients to report they are now more likely to take medications as prescribed (Delbanco et al., 2012).
Domain 3: Choosing Treatment
Using PatientsLikeMe enables epilepsy patients to have fewer Emergency Room visits (Wicks et al, 2012).
Genetic testing for BRCA1/2 leads women to select risk-reducing surgeries, post-menopausal hormone therapy, and pre-implantation genetic diagnosis (Lorizio et al, 2011).
Patient participation in medical decisions has been linked to improvements in adherence to treatment plans (Golin et al, 2006).
Shared Decision Making studies show:
Mastectomies were reduced by 74% (Whelan et al, 2004).
Prostatectomies were reduced by 33% (Auvinen et al, 2001).
Cardiac revascularization surgery was reduced by 29% (Morgan et al, 2000).
Decision aids were associated with 26% fewer hip replacement surgeries, 38% fewer knee replacements and 12-21% lower costs over a six-month period (Arterburn et al, 2012).
Surgery for herniated disks was reduced by 32% (47% vs. 32%), and back pain was significantly lessened (Deyo et al, 2000).
Hysterectomies were reduced by 21%, with cost reduction averaging $1,184 (Kennedy et al, 2002).
Domain 4: Self-Management
Patient activation - having the knowledge, skills and confidence to manage one's health - is positively related to 12 patient outcomes, e.g., having an Emergency Department visit, having A1c, HDL, and triglyceride levels in the normal range, etc. (Greene & Hibbard, 2012).
A systematic review article on family-centered care for children with special health needs concluded that most of the 24 studies found at least one association of family-centered care with a positive outcome (Kuhlthau et al, 2011).
Educational and self-help programmes that are actively supported by clinicians improve health outcomes for patients with depression, eating disorders, asthma, diabetes, and hypertension (Coulter and Ellins, 2007).
Domain 5: Health Promotion
Patient-centered care in outpatient visits (defined by Davis Observation Codes: patient activation like patient questions, chatting, and health knowledge; counseling, compliance, nutrition, exercise and health promotion) decreased specialty care visits, hospitalizations, and laboratory and diagnostic tests, and reduced total medical charges by about one-third (Bertakis et al, 2011).
Behaviour therapy for patients with advanced lung cancer produced positive effects in physical functioning (Cormer et al, 1996).
Domain 6: Public Engagement
Online patient communities that have been designed to ascertain clinical outcomes can identify the efficacy, or inefficacy, of certain drugs. PatientsLikeMe, for example, ascertained that lithium was not effective for its community of patients with ALS (Wicks et al, 2011).
David Arterburn et al, "Introducing Decision Aids at Group Health Was Linked to Sharply Lower Hip and Knee Surgery Rates and Costs," Health Affairs, Oct. 2012.
Auvinen A, Hakama M, Ala-Opas M, Vornanen T, Leppilahti M, Salminen P, et al.A randomized trial of choice of treatment in prostate cancer: the effect of intervention on the treatment chosen. BJU International 2004;93(1):52-6. Auvinen A, Vornanen T, Tammela T L, Ala-Opas M, Leppilahti M, Salminen P, et al.A randomized trial of the choice of treatment in prostate cancer: design and baseline characteristics. BJU International 2001;88(7):708-15.
Bertakis KD, Azari R., Patient-centered care is associated with decreased health care utilization. J Am Board Fam Med. 2011 May-Jun;24(3):229-39. See pages 229, 233 & 236.
Corner J. et al. "Non-pharmacological intervention for breathlessness in lung cancer," Palliat Med 1996;10:199-305.
Angela Coulter and Jo Ellins, Effectiveness of strategies for informing, educating, and involving patients [a systematic review] at BMJ 2007; 335 doi: http://dx.doi.org/10.1136/bmj.39246.581169.80
Davidson EJ et al, "The pediatric alliance for coordinated care: Evaluation of a medical home model," Pediatrics, 113.5, May 2004, pS1507.
Tom Delbanco, Jan Walker, Sigall K. Bell, Jonathan D. Darer, Joann G. Elmore, Nadine Farag, Henry J. Feldman, Roanne Mejilla, Long Ngo, James D. Ralston, Stephen E. Ross, Neha Trivedi, Elisabeth Vodicka, Suzanne G. Leveille; Inviting Patients to Read Their Doctors' Notes: A Quasi-experimental Study and a Look Ahead. Annals of Internal Medicine. 2012 Oct;157(7):461-470.
Deyo RA, Cherkin DC, Weinstein J, Howe J, Ciol M, Mulley AG. Involving patients in clinical decisions: impact of an interactive video program on use of back surgery. Medical Care 2000;38(9):959-69.
Golin, C.E., M.R. DiMatteo, and L. Gelberg (1996), "The role of patient participation in the doctor visit: Implications for adherence to diabetes care," Diabetes Care, 19, 1153-64.)
Greene, J and Hibbard, JH, "Why does patient activation matter?: An examination of the relationships between patient activation and health-related outcomes," Journal of General Internal Medicine, May 2012, 27(5), pages 520-6.
Kendall, EM, "Improving patient care with collaborative rounds," American Journal of Health-System Pharmacy, Vol. 60, Jan. 15, 2003, pages 132-135.
Kennedy AD, Sculpher MJ, Coulter A, Dwyer N, Rees M, Abrams KR, et al.Effects of decision aids for menorrhagia on treatment choices, health outcomes, and costs: a randomized controlled trial. JAMA 2002;288(21):2701-8.
Kuhlthau, KA et al., "Evidence for family-centered care for children with special health care needs: A systematic review," Academic Pediatrics, Vol 11, No. 2, pages 136-143.
Lorizio W, et al, "Pharmacogenetic testing affects choice of therapy among women considering tamoxifen treatment," Genome Med. 2011; 3(10): 64. Published online 2011 October 4. doi: 10.1186/gm280
Morgan MW, Deber RB, Llewellyn-Thomas HA, Gladstone P, Cusimano RJ, O'Rourke K, et al. Randomized, controlled trial of an interactive videodisc decision aid for patients with ischemic heart disease. Journal of General Internal Medicine 2000;15(10):685-93.
JB Talkowski et al, "Patient Participation and Physical Activity During Rehabilitation and Future Functional Outcomes in Patients After Hip Fracture," Arch Phys Med Rehabil Vol 90, April 2009.
Weingart SN et al, Hospitalized patients' participation and its impact on quality of care and patient safety. Int J Qual Health Care. 2011 Jun;23(3):269-77.
Whelan T, Levine M, Willan A, Gafni A, Sanders K, Mirsky D, et al. Effect of a decision aid on knowledge and treatment decision making for breast cancer surgery: a randomized trial. JAMA 2004; 292(4):435-41.
P Wicks et al, "Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm," Nature Biotechnology, Vol. 29, No 5, May 2011, pages 411-414.
P Wicks et al., "Perceived benefits of sharing health data between people with epilepsy on an online platform," Epilepsy & Behavior, Vol 23, #1, Jan. 2012, pages 16-23, Table 2.
Wednesday, November 14, 2012
Thursday, October 25, 2012
Wednesday, October 17, 2012
Saturday, October 13, 2012
The saddest part of the story of the assassination attempt on Pres. Garfield more than 100 years ago is the medical treatment he received in the months after he was shot. Joseph Lister had recently shown that antisepsis [sterile conditions] greatly reduced infections, so doctors throughout Europe had already widely started using carbolic acid and other practices. But Garfield's doctors repeatedly poked into his bullet wound with unwashed hands and probes, causing infections that ultimately killed him.
The story is so so sad because it's so familiar. Healthcare-acquired infections still injure many thousands of patients. Evidence-based practices to prevent them often go unused.
The head physician treating Garfield even had the gall to bill the government the equivalent of $1 million in today's dollars for his treatment. This, too, feels far too familiar, as payers continue to pay exorbitant prices on our behalf for medical errors.
Advice: Read Candice Millard's excellent book, The Destiny of the Republic.
Read another president's medical story.
Tuesday, September 11, 2012
Friday, August 17, 2012
Sunday, August 5, 2012
Thursday, August 2, 2012
Wednesday, August 1, 2012
Thursday, July 26, 2012
Monday, July 9, 2012
Tuesday, July 3, 2012
Monday, July 2, 2012
Monday, June 25, 2012
Thursday, June 21, 2012
Sunday, June 10, 2012
Wednesday, June 6, 2012