Support Rowe Girls' Battle Against Lung Disease

A story of 3 resilient girls from our area, and their fight against a rare genetic lung disease, resulting in the oldest needing a double lung and heart transplant.

The Rowe Girls.

As most people in the Triton Community are aware, our girls story is a complex one. In the midst of it, we had little information as we went from doctor to doctor, specialist to specialist all to get us to where we are now. With Claire, our oldest, getting ready for a double lung and heart transplant at anytime. To tell this story, we now know we need to back up to their births.

Claire was born prematurely at 35 weeks gestation. It was said, her surfactant didn’t developed due to this prematurity. She had to be given that, as well as ventilated, and transferred to a NICU. After her 4 week stay, she was released to come home on oxygen and a heart monitor. She would go on to see her pediatrician weekly, biweekly then monthly.

When the news came that we were expecting again, with Sophi, we tried everything we could to get a “high risk” doctor. They humored us, not really thinking there was cause for concern. They gave my steroid shots in attempt to prevent prematurity, however this only gained us about 1.5 weeks gestation. Sophi was born not breathing like her sister, no surfactant, placed on a vent and admitted to the NICU. Her stay was a little over 2 weeks.

Enter Kinley. By this time, almost 4 years later, it was brought to our attention that the girls father, paternal Aunt, paternal grandfather all had this same issue at both. The pediatrician had reassured us this wasn’t cause for any concern. It was just a coincidence, The premature births were caused by my body, and the girls were “healthy”. However, kinley was born at 38 weeks gestation, with the exact same issues. We couldn’t get any of our doctors to dig deeper.

Over the course of the next 7 years the girls would excel in dance, comp cheer, tumbling and school sports. However, they couldn’t always catch their breath or keep up. This led to yet another misdiagnosis, exercise induced asthma. They would continue to get sick and abnormal amount of times, always respiratory. Every diagnosis was the same. This time it’s RSV, next time it’s pneumonia, bronchitis etc… there oxygen levels would plummet causing their admission for OV antibiotics, and pulmonary care.

It wasn’t until their paternal cousin was born the same way, and air lifted to Riley’s Children’s Hospital, that we found a doctor willing to look deep into what he thought was an obvious genetic link. We happily took the girls down to Riley’s, and brocheoscopys were scheduled. The results shocked us. The girls had MAC disease. Their lungs had been collecting a variety of dangerous bacteria (including tuberculosis) and viruses. Their lungs were unable to expel or break up the mucus. We knew right then, these girls were in for a long road of treatment ahead of them, but we had no idea just how long and hard it was about to get.

The treatment for MAC is extensive. PICC lines for nearly half of the entire year, administering strong antibiotics, pulmonary therapy to break up and help them expel the mucus, as well as inhalant medications through the nebulizer around the clock. During that time, they were seeing the pediatric pulmonary team, the center of undiagnosable diseases, as well as the geneticist. MAC may have been found, but what we all needed to know what how? When? Where? What created it?

Once the MAC was cleared, we thought “well, that was it… they are good to go now”. We were wrong. They would soon be diagnosed with a whole new monster, the disease bronchiectasis. Their airways were damaged, and according to the pulmonary function tests that were initially done, most likely since birth. Claires lungs had been operating at 30 percent lung capacity for her entire life, and not one doctor noticed. Sophis lungs were not far behind at 40 percent. Kinley’s at 50 percent. Their lungs had been operating like this their entire lives, and their body’s over compensated for it. These girls had been to every single well visit, multiple hospital stays , and no one noticed. How? My mom heart was completely shattered. I shouldn’t have listened. I should have pushed more.

From that point on, things seemed stable treatment plan wise. They were still continuing PT vests 3 times a day, with nebulizers. The genetic team couldn’t find a genetic link, and moved on to genome sequencing. We knew the diagnosis wasn’t a good one, but the worst of it (we were told) wouldn’t happen until much later in life as adults. We had plenty of time.

Claire kept getting sick, to the point of Riley’s admissions. She could no longer keep up with Comp cheer, and even showering was getting to be to difficult. She was the oldest, had it the longest without treatment, therefore her condition was far worse than her siblings. In 2023, our entire world was rocked yet again . Claire was admitted and super sick. After testing and another brocheoscopy she declined fast. She lost the ability to walk and stand, and required oxygen to breathe. We all feared the worst. They discovered a new monster, bronchiolitis obliterans. This meant, her small airways were now damaged as well. Both of these diseases are irreversible, and the only solution is a transplant and/or a life on oxygen. They also discovered Orthostatic hypotension, and a blood clot . After getting her back to stable condition, thank GOD, a new treatment plan was put into place by a new leading pulmonologist on her case, Dr. Cheng. Pulse doses of steroids. Anyone, who knows anything about steroids, knows it is not good for you. We struggled with this, and wanted to make sure we made the right decision. We decided to get a second opinion.

We sought out one of the leading pediatric pulmonologists in the nation, who happened to practice at Mayo Clinic. We packed our bags, and headed there as one big family. Dad, bonus mom, step siblings, grandparents, paternal aunt and cousin. Bonus, we made this a fun family vacation as well to try to turn this negative into somewhat of a positive for them. After a week of tests, that doctor concluded the same diagnosis as Riley’s. So we knew we had to do the pulse doses and give Claire a fighting chance. She did. With the goal of getting her pulmonary function as high as it could go, and maintain it until transplant, she was admitted nearly every single month for well over half the year. These made her feel better, but of course, every rose has its thorns and soon into the doses Claire’s body would stop producing cortisol, a condition known as adrenal insufficiency. This caused her to completely pass out, and need an emergency injections. Which meant, more hospital stays. At this point, Claire’s mental health had gotten to a dangerous low, and she wanted to give up. She was done with the pokes, tests hospital stays. She wanted to be a normal teenager, drive her car and hang out with her friends. She was (and is to this day), a high honor student with big dreams of being a nurse and helping children just like her. Seeing her giving up the fight, Dr Cheng offered her a job with her, when she finished nursing school. And It gave Claire a new outlook on life, and a reason to fight harder. a double transplant was now considered eminent, no longer just a discussion, and a consultation at Cincinnati children’s was scheduled.

Cincinnati children’s had a FULL week of testing and education planned. The testing would tell us if she was a good candidate, and qualified for the transplant. She did qualify for the double lung transplant, however… it was deferred to cardiology for noted issues of her heart. Years of her body not getting enough oxygen took a toll on her heart, and we needed to find out just how bad. We always told the doctors to not say the side effects of anything out loud, because if it was a rare side effect , Claire seemed to be the only person that got it. That said, after cardiologists appts and testing. it was confirmed that Claire’s heart had to much pressure happening, caused by the damaged lungs. They decided they had to transplant both lungs and the heart at the same time, from the same donor. If they just transplanted the lungs, her heart may not recover.

Her two siblings, sophi and kinley, were diagnosed with the second disease bronchiolitis obliterans and have an upcoming Riley’s appt to confirm, and start their new treatment plan.

On 6/10/2024 Claire was officially added to the transplant registry, and is now stable, continuing her treatment plan while we wait for her donor.

The amount of days of work all parents involved have to miss to either be home monitoring oxygen levels, and heart rates or in hospital stays with the girls , is about half of the year for right now. With private insurance, and not meeting any of the “qualifications” for state funded help, both sets of parents are struggling to keep up.