Springfield Remi Rupert, 3 1/2, of the Orange Hunt Estates neighborhood in Springfield
almost died after she was born on Feb. 12, 2014, at Virginia Hospital Center in Arlington. But after transferring and being treated for 13 weeks at the Neonatal Intensive Care Unit (NICU) at Children's National Medical Center in D.C. -at a cost of $1.7 million, prior to insurance— she is now doing well and thriving — taking dance classes at Melina's Dancing Garden and gymnastics at the Little Gym. She's even started swimming lessons at Kid's First.
But early on in mom Brooke Rupert’s pregnancy in 2013, she knew something was wrong when doctors found fluid around Remi’s lungs.
The fifth annual Race for Every Child is scheduled for Oct. 21, 2017, at Freedom Plaza in the District. It is projected to have 5,000 runners who will race down Pennsylvania Avenue; the goal is to raise $1.5 million for Children's National. Since the first year in 2013, the race has raised more than $4.3 million for pediatric health.
Pre-race activities begin at 7 a.m.; the 5K run/walk begins at 8:45 a.m.; and the 100-yard Kid's Dash begins at 10:15 a.m. Other fun on-site activities include food trucks, live music, mascots and superheroes, and more. Race registration closes Thursday, Oct. 12 at 11:45 p.m. Visit www.raceforeveryc... to sign up as an individual or a team.
"Our scans came back abnormal at 12 weeks and the actual condition was confirmed at 32 weeks," said Remi’s mom. "At first there was fluid around the neck area. And when we came back at 20 weeks, it was surrounding the lungs. The doctors thought it would dissipate but it never did. We came back for another sonogram at 24 weeks and it was still there. Then at 28 weeks, they referred us to Childrens' National Health System."
THE EXPERIENCE was quite harrowing for Brooke Rupert, 37, an attorney, and husband Matt, 38, a real estate agent. The couple also has a son named Shai, age 5 1/2.
In addition to the fluids, doctors found out Remi had lymphangiectasia, or abnormal markings on the surface of the lungs. Brooke Rupert was told treatment for this condition had about a 50 percent success rate. After Remi was born weighing 5 pounds, 11 ounces, she was placed on a mechanical ventilator and transported to Children's National, ranked one of the top 10 pediatric hospitals in the country by U.S. News & World Report.
The NICU team at Children’s National fought to keep her alive. Brooke Rupert said at first they tried conservative methods to see if the fluid would go away on its own. "That didn't happen, so a few days after that, they placed chest tubes in to drain the fluids. That didn't work on its own; so they drained it and it kept coming back," said Brooke Rupert.
Then they tried the medications Octreotide and Proponolol, and did x-rays every day, but that didn't work either.
"Ultimately what did work was a procedure called sclerotherapy or pleurodesis," said Brooke. They put in a scarring agent and injected it into her chest tubes and rotated her so that the scarring agent coats the lungs and creates scar tissue. "The goal is to create a dam so the fluid won't have anywhere to go," said Brooke Rupert. "After that, there was no more fluid output. It was over the course of several weeks on the mechanical ventilator."
Matt Rupert added that the sclerotherapy procedure was what saved her life.
During that time, Remi had official "code" events where she required chest compressions and medications. "Her eyes were teared up and all red. They told us three different times that she wouldn't make it," said Matt Rupert.
"They put her on a machine called an oscillator. We were afraid she would be brain dead because she was without oxygen for so long. We even flew family in because we thought she wouldn't make it," said Brooke Rupert.
"While we were at Children's, we saw every specialist in the hospital," she said. "I think that being in the hospital so long caused other problems. She was on artificial nutrition and started having liver problems. Because she was on the ventilator, she didn't know how to eat. We left the hospital with the nasogastric tube that she used to eat."
On May 21, 2014 — 14 weeks after being born, and after one week in transition recovery, Remi was finally able to go home.
For her first year out of the hospital, Remi was on a feeding tube. She continued with physical therapy until eight months ago. And now, she has gross motor delays but luckily she didn't have any cognitive delays, said her mother. She was late to walking, and a year behind schedule in eating.
Matt Rupert said the worst part was the first six months after they took her home. "I stayed home the whole time; it was crazy. I slept on the couch the first year because we didn't have a hospital bed and we had an IV drip for her milk," he said. "That was the hardest part because that took a big toll. Every other hour she had to be fed."
Today Remi is doing much better. "She can function and breathe but her lungs are not regular healthy," said her mother. "She needs to have regular breathing treatments. And during cold and flu season, we have to be mindful then. She had to get a vaccination for RSV (Respiratory Syncytial Virus)."
During the Ruperts’ time at Children’s National they became close with another family whose son, Avett Rodgers, now 3 1/2, was being treated for a similar condition. The family encouraged the Ruperts to sign up for the Race for Every Child, an annual event to raise money for Children’s National.
SO FOR THREE YEARS now, they have been taking part in Race for Every Child, which raises money for Children's National. The first year, they ran with the Grateful Family Team; then with Team Remi. Last year, Team Remi raised about $1,300; this year's goal is $2,500.
"The races are the largest community fund-raiser for Children's National Medical Center," said Morgan McKean, of the Children's Hospital Foundation. "A lot of people don't know that Children's National needs money. There are a lot of things that are not funded by insurance. So there is a big need for philanthropy for research, for new equipment, and things at a pediatric hospital that aren't funded by insurance."
"Children's means a lot to us because all they've done for us and continue to do. The mission of raising money for the hospital is an important one," said Brooke Rupert. "[Children's] treated Remi like one of their own. I felt like she was more than a patient. They were very concerned with her progress and wanted to see her succeed and be healthy."
"The nurses treated Remi like she was one of their own. They went above and beyond. It was absolutely amazing. The nurses even came to Remi's birthday party," said Matt Rupert.