The doctors spoke to them about a “degenerative disorder of the nervous system” and how infants with the disease seem perfectly normal at birth. The test for a definitive diagnosis could only be done at Albert Einstein Hospital in the Bronx; the test however was not yet perfect.
“Tell us what you can do for Michael.”
“Sorry but there is no cure and nothing we can do. Life expectancy for him is probably around two years”. The doctors were as cold as ice and as straight forward as that.
They told how Michael would lose whatever skills he had. Eventually he would be unable to turn over and might be blind and deaf as well. Development of motor skills would cease and seizures would continue. “We might be able to get the seizures under control with medications. You might want to consider institutionalizing the child.”
She glared at them.
“Maybe I’ll just take him home and put him in a dresser drawer!”
They took him home and she began her status as full-time care giver. She wept every day for months as her son’s ability to move, turn over, take her finger, look at her, hear her, disappeared.
He sat with his father-in-law after returning from the hospital, a drink in hand. Her dad held him in an embrace and he began to cry, repeating over and over “Where are my sons?”
“You must be strong now. You cannot be like this in front of the women. My daughter needs you now more than ever and so does yourson”.
The doctors were right. Michael continued to deteriorate.
Every meal he ever ate they fed him. Luckily he had a good swallow reflex. He would sit strapped in a special chair and they would simply touch his lips with a spoon and he would open his mouth reflexively. He never ate anything but baby food as he never learned to chew.
He would always wear diapers and could not move, turn over or sit up; they carried him from his bed in the morning and back to his bed at night. She fed him breakfast and lunch while he fed him dinner and sat with him on his lap in a rocker while watching TV.
One of the diaper companies was test marketing a new adult diaper. The company got in touch with them as Michael grew older and offered the new diapers delivered free if they would become test marketing subjects and let the company know what they thought of the product. Free diapers as he got older and larger. He had outgrown his pampers.
She gave up any idea of ever returning to work. She was her son’s mother. He was always clean, well dressed, hair combed and well fed. She would sit outside with him in his special wheelchair on glorious Spring and Summer days wondering what was going to become of him.
They cared for him well and Michael didn’t die.
Meanwhile his corporate work life was creating obstacles. He was simply unwilling to travel overseas as much as the company wanted nor was he able to accept a plum assignment to Rome which had been offered. The pressure was on him to make as much money as possible so that they could continue to live on one income while at the same time trying to find services for Michael which would free them from 24 hour care giving. It was time to change jobs.
They were in North Carolina on July 4, 1976, the nation’s 200th birthday. The country was celebrating everywhere. In Charlotte it was pouring rain putting a big damper on local festivities. Together they watched events around the nation on TV. They had each other and their silent son.
A local agency for the disabled was picking up Michael each weekday and caring for him until late afternoon giving her some free time for herself. It was a good arrangement.
But she seemed exhausted. And with good reason.
She was pregnant.
After no kids for nine plus years came three pregnancies in four years. She had been advised for medical reasons not to take the pill, which was still relatively new. They tried to be careful. Seems now however that they couldn’t pass each other in a hall without a pregnancy.
She was worried sick as was he. They were two time-losers when it came to having healthy children. They made an appointment with an obstetrician who came highly recommended.
He was a thoroughly Southern man, a caring gentle man, the son of a doctor, born and raised in Charlotte. He listened carefully to their history while patients backed up in his office. He didn’t care. He was giving them all the time and attention he knew they needed.
“We will do all of the tests available. I promise you if there is anything even slightly wrong I will tell you honestly. And if everything is OK I will tell you that as well. I promise you my best efforts.”
The follow-up appointments included a battery of tests and evaluations.
“You are carrying a girl. She seems perfectly healthy”.
They spoke further about Michael and globoid cell leukodystrophy.
“I’ve checked with your New York neurologists and Mount Sinai – the test for Krabbe’s Disease, the more common name of the disease, was inconclusive. I don’t think he has Krabbe’s.”
He handed them a copy of a British medical study and a detailed report from the Center for Disease Control in Atlanta. “I think it is just as possible this is the cause.”
“The DPT vaccine shots?!”.
“There have been a statistically significant number of cases of serious brain damage associated with the Diphtheria-Pertussis-Tetanus vaccine. Very few in actual numbers but enough to set off alarm bells. It’s the pertussis part, the whooping cough vaccine, which may be the problem, The Center for Disease Control would like you to provide Michael’s records for further study. I’ll just bet he didn’t have any problems until after the first shot.” They agreed to send Michael’s records to Atlanta.
She took her husband’s hand and squeezed it as she began to cry.
“I’m telling you this because I don’t want you to worry about your little girl and Krabbe’s.”
They went home and discussed it. Should they go forward?
Choice was now an option. She could choose.
They were two-time losers when it came to having a healthy baby. No one in the family knew she was pregnant. They had two perfectly good reasons to terminate this pregnancy.
They discussed it. Agonized over it. “What do you think?” “It is not my choice to make. I will be with you no matter what you choose.”
But terminating was not for her. Not this time. Not now. Her choice was to go forward. It was always her choice. She had the choice. And she made it. She told him and hey put their trust in their new Southern doctor. They lay in each other’s arms all that night.
They waited until she was seven months gone before telling family and friends. They were not surprised when no one seemed exactly thrilled this time around. Everyone was worried. What if they had another disabled child?
On the coldest day in a dozen years in Charlotte, after a dusting of snow and the thermometer in single digits, she went into labor. He rushed home from the office, picking up a box of maxi-pads per her instructions. They drove Michael to the day care providers, all of whom came out to the car to cheer and wish her luck they as headed for Charlotte Presbyterian Hospital. On January 14, 1977 the little girl came into the world.
Finally, Marie. Daddy would dance with her around the family room to Hall and Oates singing “Rich Girl.” We would dance to it at her wedding.