Pete Buttigieg shared the "serious" medical diagnosis that compromised his children's health and framed his first year of fatherhood.
In an essay published on Medium, the U.S. Secretary of Transportation opened up about his twin children, Penelope Rose and Joseph August "Gus," who developed respiratory syncytial virus (RSV) as premature newborns.
The twins developed RSV about one month after they were adopted by Buttigieg and his husband, Chasten Buttigieg, in September 2021.
According to the Cleveland Clinic, RSV is one of the most common pediatric illnesses before the age of 2, although adults also can be diagnosed with it. Lighter cases resemble the common cold and are treated as such.
But severe RSV — accompanied by shallow and rapid breathing, blue lips and wheezing, for example — can lead to pneumonia, bronchiolitis or even heart failure. In between newborn diaper changes, bottle feedings and ongoing medical care affiliated with premature births, the couple faced their first serious health scare as parents.
“Penelope developed severe reflux, terrifying us when she would stop breathing and turn purple in a matter of seconds,” Buttigieg wrote. “More than once, it happened in the car, prompting Chasten to hurriedly pull over so we could unbuckle her from her seat and help get her breathing back into rhythm while standing on the side of the road.”
The couple sank into “a new level of sustained sleep deprivation” splintering their schedules into those fuzzy nighttime shifts.
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"It was joyful, too, of course," he wrote. "Some of the sweetest moments happened during those bleary feedings around one or four in the morning, as Penelope’s dark round eyes blinked up at me from behind the bottle, or when Joseph, whom we quickly nicknamed Gus, produced a resounding and adorable burp that echoed like a little joke just between us."
The trouble began after the twins caught a cold when they were about 1 month old. For Penelope, this led to coughing and breathing problems.
"Over FaceTime, our doctor expressed concern about the way her belly was retracting under her ribs as she worked to take in air," Buttigieg wrote, describing the "belly breathing" that occurs when the chest caves in to form an upside down V, according to Cleveland Clinic.
Penelope was hospitalized, followed by her brother when he also developed symptoms. Then, everyone in the household was diagnosed with RSV. "For us it just meant a nasty cold, but for premature infants like them it was a serious threat," Buttigieg explained.
The twins were put on oxygen and discharged after a few days.
Then, Gus's breathing problems rebounded and he was hospitalized again.
"We started hearing words like 'serious' and then 'critical,' and soon the doctor was recommending we immediately transfer Gus to a full-scale children’s hospital in Grand Rapids, about a hundred miles away, and place him on a ventilator," wrote Buttigieg, adding that Gus needed intubation before being transferred.
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"We clutched each other in a long hug in the hallway standing just outside the door, trying through tears to reassure each other over the sounds coming from inside his hospital room," he wrote.
The couple moved into a Grand Rapids hotel room, where one cared for Penelope while the other stayed with Gus.
"Parenting is lots of things, and one of those things is terror," noted Buttigieg. "You watch your infant, sedated and surrounded by wires and tubes and monitors and medical personnel coming and going constantly, and wonder how we could live in a universe where a few weeks could be all that a child gets on this earth."
Meanwhile Buttigieg's government job demanded his time.
"My leave had already been winding down, and now I was tending to issues that couldn’t wait or be delegated," he said. "Sometimes, that meant taking a deep breath while looking down at my unconscious 2-month-old son, on life support but still strong enough to reflexively keep his grip on my finger, and then realizing I had two minutes to get into a Zoom meeting with transportation stakeholders, a phone call with a Senator, or a TV interview. ...
"I remember looking up at our reflection in the dark window, my daughter in one arm while my free hand was taking notes on the feedback from whichever member of Congress I was speaking to on the phone."
Fortunately, Gus improved and he was soon discharged.
"Yes, sometimes parenting is terror," Buttigieg wrote. "It is also dependency, and it is reason for constant and enormous gratitude. ...
"Even with the enormous advantages we had — a good salary, excellent health insurance, flexibility at work, and most important of all, each other — it had felt like we were barely keeping things together," he noted. "I became newly mindful of the stakes of our policy debates about family matters, knowing that so many families in these predicaments have none of the benefits that we do, part of why a serious illness in the family can mean financial ruin for too many parents who don’t have the support networks that we were so fortunate to rely on."
This month, Penelope and Gus turned 1, enjoying grocery store smash cakes with family and friends.
The milestone marked the twins' first taste of sugar — and a family renewal.
"The first year may seem one of total transformation for your children, but what about their parents?" Buttigieg wrote. "It’s easy to overlook. 'They grow up so fast,' the saying goes. But so do you."
He added, "In one year, you go from someone absorbed in your own worries, hopes, and career, to having fully faced just how much in life is outside your control — and how magical it is to spend every day with someone who matters more to you than your old self could possibly have dreamed of."
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