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Doug Lake, MD, and his wife Maleia were finally getting used to having their family back together — until another crisis struck.
During her first two years of life, the couple’s youngest daughter Caroline had lived with Maleia on the East Coast while receiving treatment at Boston Children’s Hospital for pulmonary vein stenosis, a rare cardiovascular disorder. Doug and the couple’s two older daughters remained in Ames, Iowa where Doug works as a radiologist. Born with the disease, Caroline had been on the verge of death several times in her short life, but by the summer of 2018, her condition had improved enough for the family to reunite.
Nearly 2 years later, COVID-19 started to spread across the US. For the Lakes and their children — Grace, 11, Charlotte, 8, and Caroline, 4 — the dangerous virus forced the family to make a painful decision.
“Caroline’s immune system is better, but it’s still not where a normal child would be,” said Lake, who practices at McFarland Clinic in Ames. “We know that if Caroline were to get COVID, her lungs would be challenged and she might not be able to maintain her oxygen saturation levels. She doesn’t have the lung reserve most people have and, at the same time, her immune system hasn’t fully recovered from the chemotherapy she took for 2 years, so her body’s ability to mount an immune response is limited. We have to protect Caroline as best we can.”
So in March, as schools closed and businesses shuttered, Maleia Lake and Caroline left the family’s house and went to live in a condo several miles away while Doug Lake and the older girls remained at home.
The Lakes are one of many families separated by COVID-19. The pandemic has split countless relatives, particularly those of healthcare professionals who have immunosuppressed or elderly family members. In many cases, physicians and nurses who work in COVID units have separated from their children for fear of exposing their young to the virus. A recent survey by the American Medical Association found the number-one fear of physicians and other healthcare professionals was how to keep their families safe after providing patient care.
Caroline entered the world seemingly healthy. But at about 3 months old, she began losing weight and struggling to eat.
The signs were frighteningly familiar to the Lakes. Their son Benjamin, born 18 months before Caroline, had exhibited the same symptoms shortly before he was diagnosed with pulmonary vein stenosis (PVS), a condition characterized by a progressive reduction of one or more pulmonary veins that can disrupt blood flow to the heart.
“Ben was sicker than anyone realized when he got to the children’s hospital,” Lake said. “He passed within a week. He came into the hospital looking fairly normal. The pediatrician thought we would just need to switch formulas and he’d be coming home. That’s not what happened. PVS is a sinister disease that is very difficult to detect until it is too late.”
After the heartbreaking loss, the Lakes never imagined they would conceive another child with the deadly disease. There is no known genetic component to PVS and no identified link to family history, Lake said. But an ECHO found that Caroline did indeed have PVS. She and her brother became one of the only documented sibling cases of the condition. PVS occurs in less than two children per 100,000 children younger than two.
“I did not know very much about pulmonary vein stenosis, but I had read enough to know that all the case reports about it ended the same way,” Lake said. “The kids all died no matter what they tried.”
But then the Lakes learned that the Boston Children’s Hospital Pulmonary Vein Stenosis Program was having success treating children with PVS using novel strategies. Their unique method includes chemotherapy in addition to cardiac catheterization and surgery to deter abnormal cell growth. Thus far, the hospital’s approach has led to a 77% survival rate at 72 weeks compared with a typical PVS prognosis of mere months to live.
Caroline spent 8 weeks undergoing treatment at Boston Children’s Hospital Heart Center before returning to Iowa. Once home, the baby was on a feeding tube and required a number of medications, said Teri Gregersen, RN, a semi-retired nurse supervisor and family friend who has helped care for the Lake children over the years.
“Her medications were intense. She was getting more than one an hour,” recalls Gregersen. “She also had a port into her heart. She was a sick baby. When I helped care for her, I never took my eyes off of that baby. I sat by her crib for hours watching her breathe.”
Two months after returning home, Caroline developed a suspected PVS recurrence and was rushed back to Boston on an emergency flight. While in the air, the baby nearly died due to dropping oxygen levels and rising carbon dioxide levels.
The near loss of 6-month-old Caroline — and the $59,000 medical bill for each emergency flight to Boston from Iowa — led to the decision to separate until Caroline was on firmer medical ground. Lake has spoken publicly about the family’s insurance ordeal and barriers to paying for Caroline’s care.
During the 2-year separation, Doug Lake and the older girls joined Maleia and Caroline in Boston for short visits when time allowed.
“It was hard for my wife to be away from her two older daughters while they were growing and developing and going to school,” said Lake. “Imagine losing two years of your daughter’s life. For me, it was also very challenging to be a physician and to be part of the husband-wife decision making team for Caroline and to not be able to see her.”
After two years of treatment in Boston, little Caroline was well enough to come home. But her immune system was weakened from the chemo treatments.
To help protect the now-toddler, the Lakes purchased a condo nearby for Maleia and Caroline to stay when other family members became ill.
When COVID-19 hit in 2020, the one-bedroom condo became a blessing. The family separated again, and Maleia and Caroline stayed at the condo.
Maleia tried to make life as normal as possible for Caroline at the condo with daily games, story time, and stroller walks.
“All of those things were normal for us, but there was a heavy sense of loneliness,” she said. “Something was missing. It was terribly sad that Doug, Charlotte, and Grace were nearby and available, but we couldn’t access them. We couldn’t do anything with them.”
Doug Lake and his daughters eventually visited Maleia and Caroline outdoors, while staying 6-feet apart. The interactions meant separate picnic tables during meals and games with physical distance like hide-and-seek and water gun fights. The older girls called COVID-19, “the silly sneeze,” and would often remind their little sister not to get too close for fear of catching it.
“It was easier for Maleia and I because we’d done this before,” Lake said. “It’s been easier for us to be apart in the same town, than apart in Boston. I can continue to see my wife and have conversations. But when I stop and think about it, it’s definitely hard not to come within 6-feet of my wife or to come within 6-feet of my youngest daughter, who comes up and says, ‘Daddy, can I give you snuggles?’ No Caroline, you can’t give me snuggles right now. We’ve got a little while to go.”
As spring turned to summer, and the pandemic continued, the Lakes discussed how they might be able to safely reunite. They decided that if the older girls learned virtually and refrained from in-person activities, and Doug took precautions when he returned home from work, Maleia and Caroline could return home. But first, the Lakes sat down with their daughters to discuss the plan.
“When we talked about it as a family, their first question was: ‘If we go to online school, does it mean we get to come together as a family?’ ” Lake recalled. “Both my wife and I said yes. The girls’ response was unanimous. They said, ‘I’m going to miss my friends and I’m going to miss going to school, but let’s do this if it means we can be together.’ “
Under one roof again, life is sweeter for the Lakes. The best part is having all his girls and wife close and getting to enjoy those long-missed hugs, Lake said.
Grace and Charlotte have started online learning under Maleia’s guidance. And Caroline is happy to have the attention of both parents and two doting big sisters. Doug Lake does not interact with the family until after he has showered after work. He and his wife sleep in separate rooms.
“The girls are better at social distancing than I am at times,” Maleia said. “But one of us does forget sometimes. Caroline still likes to put some things in her mouth. You just have to watch what she puts in her mouth, and who touched what last. It gets unnerving.”
The possibility of COVID-19 exposure at work weighs heavily on Lake. Recently, a patient vomited on the table, partially on the radiologist, he said. In another instance, Lake encountered a patient who was not wearing a mask properly. And the family experienced a scare recently when Lake came down with a runny nose and sneezing, which turned out to be allergies.
“It’s always in the back of my mind, what are the chances that I could be bringing something home to Caroline?” he said. “There is always a little voice in the back of my head asking, ‘What is the COVID risk of this patient?’ I wear a surgical mask, glasses, and a 10-inch face shield for every patient encounter, which is more than some.”
Still, the Lakes are planning to separate again, in part because of rising coronavirus cases in their community, said Maleia. In late August, Ames, Iowa led the nation in new COVID-19 cases and in September, the city was still in the top 20.
While the uncertainty of the pandemic is frustrating, Doug Lake does his best to remain optimistic, calling himself a person who always looks for “silver linings.” Family friend and longtime caregiver to the Lakes, Jeanne Rogert, said the family’s resiliency is second to none.
“They are about the strongest people I’ve ever run into,” Rogert said. “They try to find the positive in their struggles. The cup is always half-full.”
As for the future, Lake hopes more people do their part to stop the spread of COVID, that a vaccine becomes available, and that ultimately, the virus is eradicated. Asked about his hope for Caroline, Lake does not hesitate to answer.
“Since she was diagnosed, my dream has been to someday walk her down the aisle and for her to live a normal life,” he said. “I want her to grow up like a normal girl does. That’s been my dream for Caroline since the beginning. As a family, we pray for that every day.”