Michael's story

In May 2006, my wife gave birth to two beautiful twin boys. They were 7 weeks premature, but relatively healthy with Apgar scores of 9.  Michael weighed 5 lbs, 5 oz., Matthew weighed 4 lbs, 7oz. They were admitted to the neonatal unit for respiratory concerns, which are common in preemies. Matthew was smaller and initially in slightly worse shape than Michael. Over the next week Michael’s condition worsened, and he suffered a pulmonary hemorrhage. While the doctor’s were focused on his respiratory condition, they neglected to attend to the big picture. Michael’s bilirubin level increased (he was jaundiced). We questioned why he was not being treated with phototherapy, as many of the babies in the unit were. We were told that they didn’t feel it was necessary to treat at the time. In July 2006 he had an MRI that we were told was inconclusive. For the next 10 months Michael was in and out of the hospital, he was diagnosed as profoundly deaf and had very poor tone and no fine or gross motor control. In March of 2007, he had a second MRI. This time the results were clear he had Kernicterus. This is a severe brain injury that causes deafness and severe cerebral palsy. It is the result of untreated jaundice.

Today Michael is 4 ½ years old. He can hear, but we don’t know how well, as testing is very difficult. He still has poor tone and motor control. This affects his ability to eat, communicate, and breathe properly. He cannot walk, sit up, or hold his head up. His condition exacerbates his respiratory issues and severe acid reflux. The bilirubin that damaged his brain also did severe damage to his teeth. He had 6 teeth removed and 8 root canals by the age of two.

Today he requires daily respiratory treatment, weekly occupational therapy, physical therapy, speech and language therapy, oral motor therapy, thera-suit therapy, craniosacal therapy and special education services. He regularly needs to be seen by a pulmonologist, an orthopedist, an ophthalmologist, a neurologist, a gastroenterologist, dentist and pediatrician. He has a feeding tube directly into his stomach, and has been hospitalized several times since his birth. By comparison, Matthew has slight asthma and requires an occasional asthma pump. In order to care for him, his mother can never return to her work as a teacher. Fortunately, he is very smart and very strong willed. He shows gradual improvement. He enjoys his 3 siblings, swimming and preschool.