'Born with boxing gloves on': Danielle Alaimo describes her son Malcolm
Sunlight bakes the marsh grass gold and beams through the windshield into the car, which vibrates from the music pulsing through its stereo.
“Stolen Dance” by Milky Chance, a song that mixes acoustic guitar with smoky vocals and a dance-club vibe, and which, when played this loud, has a thumping bass line.
“It’s the first song Malcolm really reacted to,” Danielle Alaimo says, referring to her son, the blond-haired, hazel-eyed crooner cooing along to the music from his car seat.
She pulls down the sun visor and puts on dark glasses. Malcolm’s glasses, his fourth pair this year, hang by their strap from the rear view mirror.
A week earlier he'd chewed off the strap on an older pair; days later he lost his current glasses at the Highway 21 Drive-In in Beaufort. So, Alaimo drove from her home in Bluffton to the theater the next day and found them in three pieces. She popped the lenses back in, thankful for their customized, durable construction – and for the S.C. Department of Disabilities and Special Needs’ family support funding that paid for $356.42 frames.
Lately, Malcolm isn’t making eye contact. He isn't eating well. And he's having more episodes – seizures, perhaps, and that’s what's worrying Alaimo as she speeds toward Charleston for a regularly scheduled appointment with her son’s neurologist.
It’s about 7 a.m. Monday, Nov. 7, but it could be any Monday – or Friday, for that matter – during the past 16 months. Malcolm’s neurology and brain-mapping appointments are twice a week. He’s in a doctor's office at least three times a week, plus 12 therapy sessions.
He sees specialists twice a year in Atlanta and Houston, three times annually in Washington D.C.
He’s not yet 3 years old.
Since March 2014, he’s had eight operations, 15 non-surgical procedures and has been admitted to the hospital 34 times.
Monday will be No. 35.
But mother and son don't know that at the moment. They drive. The bass thumps – loud, so Malcolm, deaf in one ear, can hear it.
“We need to fetch back the time” – a lyric from the song – “they have stolen from us.”
In Malcolm’s case, the thief that stole his hearing, stunted his growth and left him developmentally challenged is an acute case of congenital cytomegalovirus (CMV).
CMV continues to steal from Malcolm, and likely always will.
And that’ the hardest part, Alaimo says, because the virus is highly preventable.
No doctors warned Alaimo about CMV, and she’d never heard of it before Malcolm was born.
That’s not surprising.
“It’s the most common virus you’ve never heard of,” Dr. Gail Demmler-Harrison said during a phone interview.
According to Baylor College of Medicine’s Congenital CMV Disease Research Clinic & Registry in Houston – where Demmler-Harrison directs studies of the virus – “CMV is the most common congenital infection that is passed from mother to unborn baby.”
About 40,000 babies born annually in the U.S. have CMV. It’s a “silent” virus for 90 percent of infants, with no symptoms or health complications.
But about 4,000 children each year aren’t as lucky.
Kids such as Malcolm might have microcephaly, smaller bodies, enlarged organs, hearing loss, vision loss or seizures, among other things. Some of those conditions might disappear with time, but many children have life-long disabilities.
“The number of babies born each year in this country with congenital CMV has not changed,” Demmler-Harrison, who’s studied the disease for more than 30 years, said. “It’s become an accepted thing, and that's not right.”
“Sexy viruses” like Zika get more attention, she said, even though CMV is much more common in the U.S. There’s a lack of awareness in the medical community, she said, and some doctors choose not to broach the subject with soon to be mothers for fear of creating undue anxiety.
Roughly 400 infants die each year from the disease, according to the National CMV Foundation.
There is no cure.
The virus can be especially cruel: Pregnant women and their spouses who have, or frequently interact with, toddlers can contract the virus from those children through parenting.
Changing a diaper (CMV can be passed through urine).
Sharing a straw or utensil (it’s also passed through saliva).
Kissing a child on the lips.
Alaimo sits on a bed at Medical University of South Carolina Hospital in Charleston and holds Malcolm as four nurses draw his blood.
It’s about 2:30 p.m. Nov. 7 when the nurses finish and tape two diapers over his right arm and hand to keep him from ripping out his IV. If his hospital gown was turned around so the front was open, he'd look like a boxer missing a glove.
He’s at the hospital so he can be admitted, so doctors can monitor him overnight and see if he’s having seizures.
Dr. Patricia Myers, his neurologist at Network Neurology in West Ashley, recommended the hospital visit five hours earlier after meeting with the Alaimos. During that visit, she saw a video of Malcolm his mother had taken over the weekend.
The video shows him in a highchair, flailing his left arm and kicking his feet. A quick glance might mistake the expression on his face for a smile. A closer look shows a child with an almost crazed look in eyes, a clenched fist – a child with no control over what's happening to his body.
The video lasts 53 seconds. The entire episode lasts about 20 minutes.
Alaimo shows the video to a MUSC doctor who comes to check on Malcolm around 4 p.m. She and Malcolm have been moved upstairs to a room with a crib, which is more like a cage with high metal bars over which he tries to throw his left leg.
He tromps around the crib for a while, alternating between watching “Curious George” and lining up a caravan of plastic cars.
His mom is focused on the video – the episode, the seizure – whatever it is.
She needs the doctors to tell her what it is.
She needs a name for it.
So she and Malcolm can fight it.
Malcolm wasn’t Alaimo’s first child.
Daughter Boston was 4 when Malcolm was born.
When Malcolm came home, he and Boston laid in the bed with their mother. He was just five pounds, seven ounces, and would later drop down to just over three.
Some doctors were surprised when he made it past his first month, then his sixth, then a year.
They suggested Hospice home care when he left the hospital.
Boston had gained a brother, but in some ways she’d lost her mother.
Malcolm required – and still does – constant care.
The family lives with Alaimo’s mother and step-father. Alaimo, who’s put more than 108,000 miles on her car since Malcolm was born, jokes that she’s a transportation service. And she worries she’s not able to be with her daughter enough.
She’s seen her daughter care for Malcolm and become a more compassionate person as a result. And she’s seen her grow up so fast, maybe too fast.
The thought has crossed Alaimo’s mind that she could have contracted CMV from her daughter – sharing a straw, or a kiss.
But she tells herself she got it on a trip to Disney World, when she wasn’t as diligent about washing her hands.
Boston, now 7, sometimes makes coffee for her mother on the mornings she has to drive to Charleston.
It’s after 12 a.m. Nov. 8 when Malcolm is discharged from MUSC.
He got upset and sick to his stomach earlier in the night, when doctors and nurses tried to set up a machine to monitor his brain activity and videotape him sleeping.
They were not able to monitor him for seizures.
So, the thing that worries Alaimo remains unnamed.
And a new issue has popped up – his kidney levels aren’t normal.
Earlier in the evening as Alaimo watched her child tromp around the crib, she thought about all the progress he’s made, how beautiful his sharp, delicate features are. How bright his smile is.
It’s likely there will always be Another Problem with Malcolm, One More Thing. She’s aware of that, and she could choose to focus on it.
Malcolm’s a fighter, her “driven little thing.”
So instead, she thinks about the words he can say and sign.
She thinks about how he likes to run around on the playground.
And she thinks about how he loves loud music, how the right song can sometimes snap him out of an episode, and bring him back to himself.
And to her.