By Jennifer Costa, Red Cross regional communications director
“Our daughter has seen more than most see in a lifetime – and this warrior is only 14 years old.”
Lilly Chambers is a fighter. In August 2021, the then 12-year-old from Corinth, Maine needed to see pediatric cardiologist after a routine sports physical. Only hours later, Lilly was on a medical helicopter being airlifted to Boston Children’s Hospital – her world turned upside down by life-threatening diagnosis no one saw coming.
“Lilly was diagnosed with a rare, and typically rapidly progressing disease called Pulmonary Arterial Hypertension. She spent a month in the hospital, as they diagnosed and began to treat her,” said Katie Chambers, Lilly’s mom. “She was discharged on several medications as well as oxygen 24/7. She could no longer go to public school and had frequent visits throughout the next year to closely monitor the progression.”
Lilly’s diagnosis meant she had high blood pressure in the arteries that went from her heart to her lungs for no apparent reason. This disease usually affects women between the ages of 30-60. Lilly was in 7th grade at the time. There is no cure for pulmonary arterial hypertension – and some may go years without significant symptoms. Without treatment, however, high blood pressure in the lungs can cause the right heart to work much harder, weakening the heart muscle – or even causing it to fail.
“We got scary news that was hard to even comprehend,” Katie said. “Lilly’s pressures in her pulmonary arteries were devastatingly high – and we had to start treating it aggressively.”
Over time, Lilly’s lungs became more occluded and in November 2022, she was admitted to the hospital with severe hemoptysis – which means she was coughing up of blood from her lungs. She spent a month in the hospital – and needed several blood and plasma transfusions.
“By June, her medical team grew increasingly concerned by testing that indicated we were getting close to the point where Lilly’s heart could no longer handle the stress being caused by her lungs,” Katie said. “We needed to consider the last chance at saving her life – a double lung transplant.”
Lilly was listed for a transplant toward the end of August 2023. A suitable match was found a little more than a week later.
“We knew that this was going to be extremely difficult – and, of course, how dangerous the operation would be, but we did not have a choice,” Katie remarked.
On September 3, 2023, Lilly went in for her double lung transplant. At first, the surgery seemed to be a success. Thirteen hours after the procedure began, the 14-year-old was reunited with her relieved parents. The celebration, however, was short-lived.
“It was not long before things got worse,” Katie said. “Lilly had severe internal bleeding and nearly lost her life. She suffered a stroke and a kidney injury. The amount of blood product Lilly needed is unimaginable to most.”
“A selfless donor gave their lungs to Lilly. They saved her life as they lost their own,” added Greg Chambers, Lilly’s dad. “But there were at least 20 other people who saved her life in the following days and weeks. Lilly lost so much blood during and after her transplant that she needed 20 units of blood product in the following 24 hours!”
For perspective, Lilly’s medical team only anticipated her needing one to two units of blood. Her parents shared that their daughter had depleted all the A+ inventory on hand at the blood bank in Boston. And in the following weeks, Lilly needed even more blood to help her heal.
“Without these blood donations, despite her selfless organ donor, Lilly would not be here with us today. She would not be living her wonderful new life that she is. Our lives would have never been the same. It would not have mattered that she had one of the best teams of doctors in the world. It would not have mattered that she is the strongest person that you will ever have met in your life. No matter how hard she fought, Lilly could not do it alone,” Greg said.
Every two seconds someone in this country needs a blood transfusion. That lifesaving blood cannot be manufactured in a lab. It is only available to patients, like Lilly, thanks to generous volunteer donors. About 62% of the U.S. population is eligible to donate, but only 3% does. Right now, the American Red Cross is facing the lowest number of people giving blood in 20 years, prompting an emergency blood shortage.
“If you have never donated before, I can tell you it's the most powerful feeling. There is nothing else that can give you that feeling. You have the potential to save someone's life,” said Greg.
In December just days before Christmas, the Chambers family, friends and community came together to host a blood drive in Lilly’s honor. Donors showed up, willing to roll up their sleeves – some for the first time ever. Together they collected 29 units of lifesaving blood – just about the same amount Lilly needed to save her life back in the fall.
“Three years ago, life was normal for our family, and we never had to give this a thought,” Greg said. “Today, at this point, Lilly has received around 30 units. I know that not everybody can donate for a variety of reasons. That just makes it so much more important to donate if you can!"
The national blood supply remains critically low – and severe winter weather has further impacted Red Cross efforts to rebuild the blood supply. As a result, nearly 15,000 blood and platelet donations have gone uncollected in January alone. Snow, ice and extreme temperatures have made it tougher to move vital blood products across the Red Cross network, affecting deliveries to hospitals in some locations.
“I can tell you as someone on the other side of these donations, witnessing that moment, as a mother, to very much save your baby, you never forget just how powerful the feeling is,” Katie said. “If you can, please donate blood and help with these devastating shortages.”
Individuals are urged to make an appointment now to give blood or platelets by using the Red Cross Blood Donor App, visiting RedCrossBlood.org or calling 1-800-RED CROSS (1-800-733-2767). As a thank-you, all those who come to give Feb. 1-29, 2024, will receive a $20 Amazon.com Gift Card by email. Visit RedCrossBlood.org/Heart for details.