Why did 2-year-old Nicole tire more easily than her twin? Doctors in Miami diagnosed her with pulmonary hypertension (PH). It’s a rare condition where high pressure in the lungs makes it hard for blood to flow properly and bring oxygen to the rest of the body. If not corrected, it forces the heart to pump harder and harder until it eventually fails.
After researching the best place for treatment, Nicole’s parents learned about Boston Children’s top-ranked Division of Pulmonary Medicine and pioneering work in pediatric transplants. Every six months, they flew up for visits and discovered that Nicole also had a hole in her heart that was impairing blood flow.
Her care team tried heart pumps and different medications, but Nicole still struggled to breathe. Most kids with PH could just get a lung transplant and their hearts would eventually recover, but as Nicole’s heart muscle grew weaker, it was clear she also needed a new heart to survive.
The wait begins
In 2015, very few children had received a combined lung and heart transplant, and the odds were stacked against 14-year-old Nicole by a severe shortage of available organs and complex matching requirements. She was a pioneer because her heart medication was the opposite of what she needed to lower the pressure in her lungs. No child had received this treatment before and it was a delicate balance. She stayed in the hospital under careful observation while her family prayed for new organs to arrive in time.
I am waiting for a miracle in Boston Children's Hospital. Every single morning, I wake up asking my heart to Beat, my lungs to Breathe and my soul to Believe.
Wrote 14-year-old Nicole while she waited for a donor
For a year, Boston Children’s became Nicole’s home away from home. Her family stayed by her bedside and her devoted team of doctors, nurses and child life specialists never let her lose hope. Tutoring sessions helped her keep up with schoolwork and creative projects with art therapists filled long days in the hospital.
The greatest gift
Finally, on Christmas Day, a match was found and Nicole got her transplant. “We call it my second birthday,” she says. “Nothing can top that Christmas. It was such a gift that I received!”
She quickly recovered and went home to Miami to celebrate her quinceañera (15th birthday) with her twin sister, finish the eighth grade and join the volleyball team.
Now 25, Nicole is thriving and does all she can to give back. She is studying to become a physician’s assistant and is determined to bring hope and healing to others. She and her family started a fundraising program to support kids and their families as they wait for their own lifesaving “miracles” at Boston Children’s. So far they’ve raised $75,000!
