July 17th will be my third year riding in the Children's Hospital Colorado Courage Classic, and I am thrilled that Will will be joining the ride this year as well! This year, I am humbled and excited to be riding over three mountain passes in honor and celebration of one fabulous little gal, miss Penelope Jane! Penelope Jane is the most precious little girly with the most wonderful parents and one heck of a story! I have gotten to know Penelope and her parents, Allie and Gino, and hear their story through my time as Penelope's nurse at Children's Hospital Colorado on our cardiac progressive care unit. When I started as a heart nurse at Children's Hospital Colorado, I quickly learned that the Courage Classic was an amazing fundraising event and that riding for the Cardiac Climbers in honor and support of our congenital heart families was an opportunity not to be missed, and this year is no exception!
Please take a moment to read about miss Penelope Jane and her family's profound, unique, and impactful story below. Their congenital heart story does not only begin with their daughter, Penelope, but with their precious son, Santino. Will, my husband, has the unique privilege and honor of riding in beautiful memory of Santino.
On July 27th my husband and I had a beautiful baby boy, Santino, 8.1oz, no complications, and no obvious health concerns. We left the hospital as new parents with a lot to learn. Over the weeks and months, we started feeling something was going on with our son. He had very bad colic, reflux, and was very difficult to console as a younger baby. As his parents, we really wanted to pinpoint what might be bothering him. As a young parent, we really didn’t know how to advocate for him and did not understand what all of his symptoms were pointing to. We took him to multiple Urgent cares, the ED, and even got different opinions from primary care doctors, the answer was always “he looks great, nothing is wrong”. As he grew, his colic slowly diminished, he was happier, and he was meeting all his milestones. So, we lived on, we took him everywhere, he traveled, met many family members and was always having fun. Deep in my gut I still knew things weren’t completely ok, I always thought it was a GI issue and had no clue what we had in store.
We took Santino to a new primary care shortly after his first birthday, he had a one-year checkup, and his new doctor knew something was wrong. He had stopped gaining weight but was still meeting milestones and looked fairly normal. She sent us for labs, primarily a sweat test to check for cystic fibrosis. Time went by and still no answers. Around 14 months old, we were in the urgent care once again. Santino wasn’t looking right for a few days and I felt the only thing I could do was go to the pediatric urgent care. My husband was working, and I let him know I was just taking Santino in to make sure nothing was going on, I knew we would be sent home shortly after being seen (as always) so I even had plans to take him to the museum after he checked out. But this time was finally different! They took vitals and realized his oxygen was severely low. I was hopeful that we were finally going to get some answers and called my husband to let him know we were getting admitted. We both knew it wasn’t good but also didn’t realize the possibility of an uncurable diagnosis. Over the next month our son would have multiple tests, labs, echos, and finally a cardiac cath. The cardiac cath was able to confirm pulmonary vein stenosis, at this point only on vein was open enough to attempt ballooning, and his lungs were not in good shape at all. The ballooning didn’t work and the morning after his cath he went into cardiac arrest. Over the next few weeks, we tried everything we could to get him home, without success Santino passed peacefully with all his family by his side.
My husband and I spent the next few years pulling our life back together. Slowly we grew our careers, our relationship and eventually wanted to grow a family again. We were told by multiple doctors that our sons’ condition was extremely rare, and we should and could try for kids again whenever we felt ready. It took over 6 years for use to be ready to try again.
With our history we were automatically sent to a fetal specialist for more in-depth ultrasounds and echo to confirm there weren’t any cardiac abnormalities. At 15 weeks gestation we had the echo and anatomy scan scheduled. It was then we were told that our daughter had what looked like Hypoplastic left heart syndrome (HLHS). We were referred to Colorado fetal specialist to get a confirmed diagnosis and had to decide one of three options. We could end the pregnancy, let her pass away after birth, or go through a series of palliative surgeries with huge risks involved. Knowing there was really no right answer, we choose the one that felt right to us and decided to fight for our daughter. We were unable to fight for our son and knew we were going to do all we could to give our daughter a chance. We drove back and forth from Albuquerque to Colorado for appointments and eventually relocated for a few months.
Along with HLHS our daughter was born early at 34 weeks, this added a few more surprises to our journey. Penelope has had two of three open heart surgeries and was in and out of the hospital for the first 8 months of her life. While in the hospital our family endured things we could have never imagined. Penelope proved her strength so many times and taught us how strong heart babies really are. We are so very thankful for Colorado Children’s Hospital for giving her a chance at life and will forever be grateful for the amazing people we are meeting along the way. We still have a long road ahead and know things won’t be easy but being home with our daughter makes it all worth it.
It is an overwhelming privilege to be riding for Penelope Jane in this year’s Courage Classic alongside Will who will be riding for Santino. We feel unqualified to be riding with the pictures and stories of Penelope and Santino on our backs, as I have never spent a day in the shoes of Penelope or Santino or their family. Biking is not my forte, especially at altitude and over mountains and for a distance I don’t think I have fully comprehended. It will only be Penelope and Santino's stories and the passion to see future congenital hearts healed and lives saved that will be my inspiration to put one pedal in front of the other!
Santino and Penelope will not be the last child to face a life-threatening congenital heart diagnosis, and their families will not be the last to be asked to navigate this journey. Join me as we work to support positive outcomes and healthier futures for children with congenital heart defects.
Keep smiling and go live life fully,