With big curls, sporting a tutu and a smile, 3-year-old Sadie blew out the candles on her birthday cake this February. Eight hours later, she was in the hospital, her small face eclipsed by a nebulizer. Things can change very quickly for a family with a medically complex child.
Sadie’s mom, Tarin Smithline, 37, an upbeat, outspoken Miami attorney, says she found out at her 12-week ultrasound scan that her baby would be born with her liver outside of her body. “When I decided to have this child and do everything in my power for her to thrive, we didn’t know if she was going to make it or what support she would need,” Smithline explains.
Sadie thrived but indeed remained in need of much support. She had her first surgery at six days old. After 54 days in the NICU, Sadie’s parents brought her home. She would vomit 12 times a day, wasn’t gaining weight, had frequent therapist appointments and doctor weigh-ins. Her mother was pumping breastmilk around the clock, struggling to get Sadie to eat. “We were doing whatever we could to survive the craziness,” she recalls. “It was clear there was no going back to work.” American millennial parents who have children with special healthcare needs are up to 7.9 times more likely to leave the workforce or lose employment, according to the Journal of Pediatric Health Care, compared to their peers without health challenges at home. The U.S. Department of Health and Human Services estimates that there are 14.6 million kids in America with chronic medical, behavioral, or developmental conditions expected to last 12 months or longer. Their parents, people in situations like Smithline’s, are almost 800 percent more likely to opt out of the workforce, out of a necessity that can be financial, emotional, or both.
A Work-Life Rollercoaster
Putting careers on hold or leaving jobs altogether to stay home with an ill child can be both isolating and rewarding for the parents who do so; a rollercoaster of recurrent hospitalizations, schedules packed with specialist appointments, complicated and time-consuming care-taking demands, and the labyrinthine endeavor of figuring out health insurance claims, which can feel like a job in itself for even the healthy among us. But in this case, it’s a job that can replace a once-promising career.
Putting careers on hold or leaving jobs altogether to stay home with an ill child can be both isolating and rewarding for the parents who do so.
Smithline spent seven years in school to become a lawyer; her career was fundamental to her identity. Folks with that kind of relationship to their work before becoming a parent often return to it after having a baby — and she tried to, part time, which was discouraged at her firm. When a high-needs child or other difficulty makes going back to work impossible, these parents can experience something of a fractured identity. They have to put away the 9-to-5 role that may have previously been defining to them and find a new kind of resilience.
The Pew Research Center found in March that of the 23 percent of Americans who have taken leave from work to care for someone in their family with a serious health condition, 20 percent of the women and 13 percent of the men polled were caring for a child younger than 18. Two-thirds (65 percent) of the women considered themselves the primary caregivers in all situations, while only 44 percent of men said the same.
One such mom is a nurse practitioner in D.C., Jan*, whose 2-year-old daughter, Quinn*, was born with cerebral palsy, intractable epilepsy, a visual impairment, and motor delays due to complications in utero — none of which was diagnosed before her birth, nor evident right away. At first, Jan was able to return to work part-time.
But in the medical field, Jan faced reminders of her traumatic birth experience everywhere, meanwhile her daughter’s condition continued to worsen. “We were in shock,” she says, of trying to get through those early days of working and caring for Quinn. She ended up taking time off through the Family and Medical Leave Act of 1993 (FMLA), and discovered, in the process, that pulling back from her career was going to be the best way forward for her family — no matter the years, additional schooling, and certifications she achieved to get there.
“There were so many therapies. It was so intensive, that there was no way I could work. I was schlepping her to physical therapy, occupational therapy and neurological appointments. A fever would land her in the hospital, because it brings on her epilepsy,” Jan says. And still, there are “constant visits — medical organizing is a huge part of my day,” she says.
Luckily, Medicaid provided her with 56 hours a week of nursing hours to help with her daughter’s worsening epilepsy; Quinn began having 80 to 100 seizures a day and needed to be held constantly. “It was becoming completely overwhelming,” she says. Quinn’s seizures are better under control now, but each meal of her ketogenic diet takes at least 45 minutes to prepare. “We’re pretty stable, but that can change at any moment,” Jan says.
Saima Aftab, MD, medical director of the Fetal Care Center at Nicklaus Children’s Hospital in Miami, says staying home with a child with complex medical needs is “a full time job and a half.” And an often necessary one, because medical daycares can be understaffed, and spaces hard to come by. And so a parent — a mom, usually — makes the tough choice to stay home.
She describes a day of going to a single doctor’s appointment for a mother she works with, who has a 4-year-old with complex feeding issues and a nasogastric (NG) feeding tube in his nose:
“She wakes at 5 a.m., cleans and dresses her child, gets her other kids ready for the day, feeds the complex-needs child pureed food... She drives an hour to another county for the appointment; has to park, then take her child in a stroller or wheelchair to wait maybe an hour for the appointment, fill his prescriptions. That’s her whole day. By the time she gets home, it’s 7 o’clock. Imagine five of those days a week.” That’s a 14-hour stretch with no time for work — nor anything else. And there’s plenty of work involved.
“For some parents, navigating insurance and medical claims is a full-time job besides everything else they’re doing,” says Susan Diver, a social worker at Easterseals, which provides resources and support to people and families living with disabilities. “They’re going to do what they have to do to help their kids.” This is exactly how Missy Gallagher described her choice to leave her job to become a caregiver — a choice she had made once before.
When her mother was going through the final stages of ALS, Gallagher left college to care for her. When she was later pregnant herself, Missy found out that her baby, Finn, would be born with Down syndrome. The 33-year-old says leaving her job at a pediatric medical daycare was the obvious choice. She made less money than it would cost for Finn to attend a program like the very one at which she worked, and, she says, “I wasn’t going to not take care of my son.”
Though she calls herself a “nurturer by nature,” Gallagher says she felt like a hermit staying home, finding solace in other parents she met in a Facebook group. “I lost a lot of myself, because my whole world revolves around him. My brain was so focused on him at the time that I couldn’t focus on work.”
The High Cost Of Healthcare
Money is another distracting stressor. This year, Gallagher’s husband made just $13 a month too much to qualify for Medicaid assistance, so they pay out of pocket for insurance. The Kaiser Family Foundation finds that Medicaid covers 60 percent of children with disabilities nationally, including some in higher income families that nonetheless struggle to keep up with crushing medical costs.
Sadie is one of those children who qualify for Medicaid. When her mom, Tarin Smithline, left her job at a small research firm, she and her husband (also a lawyer) blew through many years of savings in the first year of Sadie’s life. Their insurance had a cap of five therapies per week (including occupational, physical, feeding and speech). “Imagine how quickly those sessions would have expired,” she says. Because of additional Medicaid coverage, they received the help of an in-house pediatric nurse.“I am so fortunate that we got those nursing hours,” Smithline says. They enabled her to go back to work part-time in a flexible position with a boss who is a single mother herself and sympathetic to Sadie’s needs. But because nurses can’t be drivers, that benefit isn’t a silver-bullet answer to the complex needs families like Smithline’s face. “You’re making a choice,” she explains. “And you basically have to forgo your child’s well-being because you can’t get them to appointments when you’re working.”
Amber Drea’s son Stanley was diagnosed with biliary atresia, a disease that affects the liver and bile ducts, when he was just two months old. At eight months, Stanley received a liver transplant. “I thought, He had the liver transplant, now he’ll be healthy,” the 39-year-old recalls, of her initial optimism. But spending 37 days in the hospital after his surgery delayed his subsequent physical development. Now, at 18 months, he takes multiple medications; has physical, occupational and feeding therapists; and a special instructor to help him with his delays as part of Early Intervention.
After Stanley was born, Drea had been determined to return to her job as managing editor at a beverage trade publication in New York, and she did for 15 months while a nanny stayed home with Stanley. That initial desire to continue progressing in her career has not waned, but she has nonetheless put in her notice. She and her husband simply found they couldn’t afford to pay for childcare.
“I need to go back to work, I worked so hard to get to where I am,” she recalls thinking when Stanley was a baby. “I’m older, so if I take a break from the workforce, it’s harder to [come back and] compete against younger people.” But for now, since they receive health insurance through Stanley’s dad, and she has the option of freelance writing when she’s not taking care of Stanley — at night and on weekends — she was the natural choice as the one stay at home.
She hopes to see Stanley’s feeding improve enough that he can one day go to daycare. “It took me literally a year to realize that this is the change that needs to be made, and I need to accept it and do what’s right for my child and not have too much anxiety about it. I’ll find a way and put faith into it,” she says. Her work wasn’t the only sacrifice the family made; they also moved to a cheaper apartment.
Smithline downsized as a result of her child’s demanding care, as well, renting out the house she and her husband own and moving into her parents’ garage for support. “A blessing on so many levels” for the family: they save money, and her parents love seeing their granddaughter every day. Next, they found a daycare that would be open to caring for Sadie, who is now on track developmentally and 90 percent off her feeding tube.
“My husband and I joke around that we’re acclimating our way back to society,” Smithline laughs. She’s now planning to return to work five days a week with flexible hours. It’s a happy new chapter for their family; though for many, a child with chronic illness means a permanent tilt to someone’s work-life balance.
“Sadie was worth it. And the silver lining was, I was afforded the time with this child that I never thought I’d have,” Smithline concludes. “My life’s work is Sadie. Once you have a kid, you do whatever you have to do to have them survive and live the best life they can.”
*Names have been changed.
By: Liz Tracy