A Jefferson County girl is in Philadelphia over the Thanksgiving holiday for a medical treatment that hopefully will let her get back to being a regular 8-year-old.
Terra Cordova, her twin sister, Luna, and their parents will travel to Children’s Hospital of Philadelphia (CHOP) so Terra can be treated for plastic bronchitis, a rare disorder of the lymphatic system that causes severe respiratory issues.
A GoFundMe account has been established to help the Festus family with expenses.
Not your average infant
Even before her birth in 2014, Terra was not your ordinary baby. She and Luna are “mono-mono” twins, meaning they shared a single placenta and amniotic sac, a condition that occurs only in about one out of every 20,000 pregnancies.
An early ultrasound on mom Kaylin Cordova showed that Luna seemed fine, but Terra had hypoplastic right heart syndrome, a serious chronic heart defect.
“We found out about the heart thing at about 14 or 15 weeks,” said dad Jesse Cordova, 35, of Festus. “Kaylin was on bed rest for 88 days.”
Terra and Luna – dubbed “the twincesses” by family members – were born Feb. 9, 2014. Terra had her first surgery at 2 weeks, and underwent a number of hospitalizations and three more surgeries over the next few years to help correct her heart defect.
After the last surgery in 2017, however, things settled down for the Cordova family (which also includes Alexis, 14, and Matthew, 12, who share time with their biological father).
“After spending so much time in hospitals and doctor’s offices, we had this nice stretch of years of just follow-ups,” Jesse said. “It was pretty much smooth sailing.”
Until this summer.
Life threatening
One day in July, Terra had a bout of severe coughing that was unexpectedly productive.
“She brought up this stringy mass that was just hanging out of her mouth,” Jesse said. “Kaylin actually reached in and pulled it out. We thought at first it was maybe something she had swallowed, like a piece of her blankie she sleeps with.”
Once they realized the object was organic, the Cordovas rushed Terra to the emergency room at Cardinal Glennon Hospital in St. Louis, where she was diagnosed with plastic bronchitis.
Lauren Biroc, a nurse practitioner with the Jill and Mark Fishman Center for Lymphatic Disorders at CHOP, explained what that diagnosis means.
“In most of us, lymphatic fluid comes from tissues and travels up the main highway of the thoracic duct, where it empties into the venous system and gets pumped back through the body,” she said.
But, patients with heart defects often have increased pressure in their venous systems, which can cause lymphatic fluid instead to leak out into nearby airways, Biroc said.
“When the fluid comes in contact with warm, moist air, it solidifies into something like rubbery egg whites called casts, which can clog the airways,” she said. “It’s definitely life-threatening.”
For the past few months, Terra has brought up casts on a fairly regular basis.
“Her lips get blue,” Jesse said. “She’s violently coughing and gagging – eyes bulging, red face, the whole thing. It comes out in a clump, but when it’s spread out you can clearly see the way it branches.
“Then, once she gets it out, gets her breath back, her O2 levels go up, her color improves, she’s fine. She’s lucky – some kids need weekly bronchoscopies to remove them.”
In addition to medication and inhalers to loosen the casts and help her expel them, Terra endures daily sessions with a “shaker vest.”
“It’s like a life vest with air hoses that hook to a little machine that forces air in and out causing vibration,” Jesse said. “It’s like sitting on top of an off-balance washing machine. She does that for 30 minutes three times a day.”
Her dad said Terra is very nonchalant about her situation.
“We’ve talked to her about her condition and she understands, but she just doesn’t worry about it,” he said. “On the bus ride to school the first day, she coughed up a cast. She took it to the nurse, washed her hands and trotted off to class. It’s a normal thing for her.”
Not a cure, but…
The Cordovas expect to be at CHOP for 10 to 14 days.
“She will have a lot of tests. Then, if all goes well, the embolization is the last thing,” Jesse said.
During that procedure, done under general anesthesia, doctors pinpoint the location of the leaks that have allowed lymphatic fluid to go where it’s not supposed to.
“In the cath lab, we gain access to the lymphatic system and inject contrast, then go to the adjoining lab for an MRI to image the abnormal channels,” Biroc said. “Then it’s back to the cath lab to put dye in while doing a bronchoscope to track down the leaks and glue-embolize them shut. It’s actually a medical-grade superglue.”
Recovery is typically uncomplicated.
“My understanding is that it’s a one-and-done thing,” Jesse said. “If it’s successful, no more casts. Terra can go back to being a regular kid. That’s our prayer.”
The procedure is new enough that long-term predictions can’t be made, Biroc said.
“The interventions we do are our bread and butter,” she said. “We’ve gotten good at those. But we’ve only been doing them for five years or so, so to say it never returns is an unknown.
“After all, we’re not curing their condition of having higher venous pressure. But the embolization does end the casting. Typically, patients require one treatment and the plastic bronchitis resolves.”
Stressed-out budget
While they are looking forward to the trip, the Cordovas are struggling with expenses.
“We’re driving, because it’s cheaper, plus Terra has medical equipment we can’t carry on (a plane) and we don’t want to check as cargo,” Jesse said
Both Jesse and Kaylin work at Footwear Unlimited in Fenton, which has been supportive of the family.
“They say, ‘Faith and family first – don’t worry about it,’” Jesse said. “When we were in Glennon in July for more than a week, they were concerned and checking on us.”
But missing two weeks of work will do more damage to an already stressed budget.
“I have some paid time off, but neither of us qualify for FMLA right now,” Jesse said.
Insurance will pay some of Terra’s treatment costs, but the Cordovas aren’t sure how much. And of course, insurance doesn’t cover travel expenses.
The family has reservations at an Airbnb at a cost of nearly $3,000.
“We applied to stay at the Ronald McDonald House,” Jesse said. “But we don’t know if we’ll get that.”
A yard sale fundraiser recently brought in $900, and the twins’ former day care, Brain Station, chipped in more.
“We’re asking humbly for any kind of financial help,” Jesse said. “We feel bad because we’ve already gotten a lot of help from people with the heart thing.”
The family has set up a Facebook page called “Philly or Bust: Help Terra Get to Children’s Hospital of Philadelphia,” which contains both a QR code and Venmo information for donations.
Jesse, a Freemason, said perhaps a fellow Mason in the Philadelphia area might welcome him and his family to share the Thanksgiving meal.
“And of course, we ask for prayers,” he said. “There’s power in medicine, of course, but the power of prayer is real, too. We’re extremely grateful for any kind of support.”
The Cordovas hope that Terra can soon go back to the typical concerns of a third-grader.
“She takes medication daily and will for life, but otherwise her outlook is great,” Jesse said. “She shouldn’t need any other procedures or anything. Statistically speaking, after she turns 35, the risk of developing complications will be higher than normal, but we’ll worry about that then. For now, her cardiologist says leave her alone and let her live a normal life. She’s our miracle kid.”