During this year’s Cox Prize for Rare Compassion, our winner, Brit Trogen, worked with the Baker family and their son, Boruch. Trogen is in her second year at New York University School of Medicine and earned the grand prize with her essay The Strength in Small exploring Nemaline Nermaline disease.
We asked Malka Baker, Boruch’s mother, to help us understand more of their story.
“Until that day, we’d lived a fairly privileged, sheltered life,” Explains Baker. “I was an exchange student who started in Canada followed by college in Israel and then the United States. He was a high school student in the US followed by college in Israel. Friends suggested we meet, and it was love at first sight. As is common in our circles, we underwent genetic testing prior to our engagement – and once we got the all clear from the geneticist, we were engaged to be married.”
“Our wedding was held in a town hall that was big enough to hold over 600 guests. After that, we traveled to Israel to begin our new life. Boruch’s pregnancy was uneventful. He moved little in the womb, but it was my first pregnancy, I knew no better. Prenatal care was somewhat fragmented due to our travels, but we returned to our parents’ home for the birth, and had an excellent obstetrician and hospital.”
“Boruch’s birth was very prolonged, about 36 hours in total. Again, it was my first baby and I knew no better. From day one, he had a weak swallow. His doctors blamed it on the lengthy delivery, and were certain things would improve with time. He was seen by a pediatric neurologist before discharge from the hospital, and we were given the all clear to go home. Despite our best efforts, Boruch did not gain weight, and he was readmitted to the hospital at three weeks, where he stayed until he was six months old.”
“Prior to discharge, a muscle biopsy showed that he had nemaline myopathy. Our neurologist felt he was on the milder spectrum, and assured us that with regular therapy, his future would be bright.
Since that time, life has been a roller-coaster of ups and downs. Innumerable hospitalizations, including times when we were sure he would not come home. Gastrostomy tube placement. Nissen fundoplication to prevent further aspiration pneumonia. Repeat Nissen when the first failed.”
“Tracheostomy when Boruch failed extubation after another bout with pneumonia. A move to the USA in hopes for better care. Lengthy hospitalizations for severe scoliosis. Left lung removal after a pneumonia that would not resolve. Routine visits to pulmonology, cardiology, ENT, neurology, orthopedics and therapy. He is also part of a longitudinal study on nemaline myopapathy, funded by ‘A foundation building strength.’ At age 16, Boruch continues to require 24 hour help. Retention of help is a story in and of itself.”
“Despite this, Boruch continues to thrive. He is a student at Henry Viscardi, a school in Long Island, NY, which caters to bright students with physical limitations. He has traveled the world, met his idols, played drums in a band and become a serious gamer. Despite his challenges, his upbeat nature is enviable. He hopes to have a future in technology, but will require medical technology for life, as well as constant supervision, to get there. Since his most recent surgery (lung removal in 2014), he has been out of the hospital, a blessing we are grateful for every day.”
When asked what her advice was to other parents she responded, “This ride is tough. It’s tougher watching those around me who struggle with choices that pale in comparison to the choices we make daily. The internet has been a huge support for us- by bonding with others in similar situations and helping them out, getting through each day has been easier. Try to continue to follow your passions- and don’t neglect yourself. You’re going to need Herculean strength to continue to fight.”
To learn more about the Cox Prize click here, and to learn more about Nemaline Nermaline disease click here.