Right up until the time her first son Micah was born, Victoria Prince thought she was having “a typical kid.”
But things changed quickly for the new mom and her growing family once they welcomed Micah into the world. Looking back on that day two-and-a-half years ago, in a room at Boston Children’s Hospital after being life-flighted to the hospital after his birth, the list of diagnoses were a lot to take in – as was the reality that Micah’s future would be drastically different than they’d expected.
“Nobody wants to be told that about their kid,” Prince said. “That was the worst day of my life.”
Micah has an abnormality in his PRKCE gene that, coupled with his presentation of congenital abnormalities, creates a combination so rare that Micah is one of only 15 in the world with that pairing.
“He is so complex,” she said.
When Micah was born, he had a 42 centimeter head circumference, which for an average child is only 34 centimeters. Prince described how a normally developed human brain has a lot of deep grooves and folds, but for Micah that isn’t the case. His brain is like a washboard, Prince said, lacking those grooves and folds needed for neuron connection caused by bilateral polymicrogyria.
Micah also has intractable epilepsy, a seizure disorder in which a person’s seizures fail to come under control with treatment. Prince said he has been seizing since he was in the womb and is stricken by several different types of seizures, including epileptic spasms caused by West Syndrome, so “you have to be well versed in recognizing the types.”
“But he’s the happiest kid,” she said.
Then there’s the Dandy-Walker abnormality, which Prince said is when the third and fourth drain pipes in a person’s brain don’t form correctly and had to be surgically corrected when he was three weeks old. He had Syndactyly in his fingers (what Prince called Micah’s “Spock hands”) that were corrected before he was one. Generalized hypotonia causes decreased muscle tone, and if that wasn’t enough, Micah also has chronic lung disease.
But through it all, it has made such a difference in Prince’s outlook. Of course, she was sad and angry at first – what parent wouldn’t be? – but things quickly changed. The perspective she has gained likely wouldn’t have happened if not for Micah.
“He has taught me so much,” she said. “I’m just a lot more appreciative and grateful for my life. Our days are numbered, so just enjoy the ride.”
It hasn’t always been easy, as Prince described it as “I only know how to function in chaos.”
Up until January, it was basically her and her husband, Greg, as the primary caregivers. They worked opposite shifts to make it work, but it was difficult in more ways than one.
“That’s super normal with special needs parents,” she said. “It was a huge adjustment and a huge strain on our relationship. It took a while and we went through some rough patches.”
So earlier this year, they brought on a nurse to help during the weekdays, so Prince can go to nursing school and take care of Elias (their second son, born this May) as well, and continue her work as an LNA at Scott Farrar. But it had to be the right fit because of Micah’s needs. The person would have to be able to identify seizures, which can happen at any time. There’s the communication aspect, because as Prince puts it “you have to be able to speak Micah.” He also has a G-Tube dependence, which means he gets all of his meals through the tube due to an oral aversion.
“We have to prepare his blends every day,” Prince said, which consists of vegetables, fruits, protein, gains, milk, dates and oils and allows her to get him the nutritional balance he needs. “He’s the healthiest two-year-old I know.”
He can say yes and no, and through his services, has a program that is teaching others ways to communicate. Right now he has games where he can press a button for more and the next step is to add one that can signal when he is all done.
“That way he has more than one way to communicate,” she said.
Micah doesn’t walk and because of his pseudoarthrosis of the right tibia, which is congenital condition where his tibia didn’t form right, it affects his mobility and strength. He has to wear ankle foot orthosis braces and can’t support his weight without them. That coupled with his special stander gives him the ability to stand on his own.
During Micah’s three-and-a-half weeks in the NICU after his birth, the family was referred to Monadnock Developmental Services for an evaluation; eventually, they were connected with Rise for baby and family, where Micah has been receiving services since he was three months old.
At the age of two-and-a-half, Prince said her oldest son functions between a two- and four-month-old, “so we use all the services.”
He gets physical therapy two times a week, occupational therapy and speech therapy once a week and a sees a vision specialist once a month. He also visits with a slew of specialists every three months. The support they receive has been so helpful to both Micah’s development and Prince’s knowledge of what her son needs.“They go above and beyond for us,” she said. “Everyone we’ve worked with through Rise has been so kind, so generous.”
Having a child with a disability has definitely opened Prince’s eyes and realizes more can be done.
“I think a lot of advocacy needs to be done for disabled people in America,” she said. “And it starts with disabled kids.”
She has no idea what the future holds for Micah. His list of diagnoses are rare when put together and there’s not a lot of research out there about it all. In fact, Micah is part of so many studies around the world, that Prince has lost track of how many there are.
“It may not help him, but it may help other kids,” she said. “Because once you have a gene abnormality, what’s done is done.”
It can be both tough and rewarding.
“Having a special needs child is like being admitted to the best club you never wanted to be a part of,” she said.
And at the end of the day, she just wants Micah to feel loved and enjoy what he does have. She wants him to experience the world around him, like their many trips each week to the merry-go-round at Oak Park.
“Our biggest thing has always been his quality of life,” Prince said. “He’s super cool and has a wicked personality. And I know I’m biased – but I’m his mom.”