We sat down with Deana Petrova, the mother of a child with a rare congenital heart defect, to discuss her family’s experience at Rocky Mountain Hospital for Children (RMHC).
Can you tell us about your daughter’s story?
Our daughter was diagnosed with a rare congenital heart defect, Truncus Arteriosus, at 23 weeks gestational age. Truncus Arteriosus affects one in 10,000 children in the United States. The particular type of Truncus that our daughter has makes it even more rare. She underwent a lifesaving open-heart surgery to reconstruct her heart three days after birth; we were discharged nine days later. Our daughter's strength and resilience definitely put her on the list of the record breakers for such a swift recovery from a major surgery at such a young age. We count our blessings and pray that she continues on this path her whole life.
Why did you choose RMHC?
We interviewed four different surgical, cardiology and pre- and post-operative care teams. We chose RMHC for several reasons:
The surgeon. Dr. Leonard is an outstanding surgeon. His professional history demonstrates that he has ample experience in repairing many complex congenital heart defects in newborns. He has the technical mastery of pediatric cardio-thoracic surgery that our daughter required. Moreover, Dr. Leonard is a compassionate, patient and understanding individual who we as parents needed and looked to while preparing for the surgery, as well as during our daughter’s recovery in the pediatric intensive care unit (PICU). He always thoroughly answered every question and addressed all of our concerns, and we consistently felt confident in the work of his team and were tremendously satisfied with the all-encompassing and high-quality care his practice offered. And now we could not be any happier with the outcome of his hard work on our daughter.
Pre (NICU) and post (PICU) operative care teams. Leading up to the surgery, we met with and interviewed representatives from both of these groups. We found that the NICU and PICU at RMHC had excellent facilities, staffed with very knowledgeable and experienced neonatologists, intensivists and nursing teams. Everyone clearly understood and addressed our numerous concerns and questions. Since we looked for a complete care team to perform efficiently across all the different departments while providing care for our daughter, it was clear that RHMC’s intimate practice was well-suited to address and deliver on these concerns.
RMHC is a very personal and private small practice that is close to home. We live in Denver, Colo., and while we carefully considered several out-of-state options, our mind was made up once we met with RMHC staff and toured the hospital. We were very impressed and finally confident in our decision to stay home. We immensely enjoyed our experience at RMHC, starting with the NICU and ending with our discharge home from the PICU. We got to know every one of our wonderful nurses and establish a great relationship with the team working so hard on getting us home as quickly as possible. Staying at RMHC was pleasantly quiet, private and very peaceful.
What type of surgery did Dr. Leonard perform? Was there more than one? Are there other procedures slated for the future?
Dr. Leonard performed an open-heart surgery on our infant daughter to reconstruct her Truncus, type A3. Instead of the pulmonary artery that carries deoxygenated blood from the right ventricle of the heart to the lungs (splitting along the way) and the aorta which carries the oxygenated blood to the rest of the body from the left ventricle, our baby had one great vessel sitting over her ventricles which were separated by a VSD (Ventricular Septal Defect), creating a single ventricle where deoxygenated and oxygenated blood mixed. She also had a large ASD (Atrial Septal Defect). Truncus Arteriosus is rated as one of the riskiest, most complex and difficult heart defects to repair.
As our daughter's heart and body grows, the cadaver conduit placed in her heart to connect the right ventricle to her pulmonary artery will have to be replaced with a larger one to accommodate for that growth. She is expected to have at least three open-heart surgeries before she reaches adulthood and, in between, may require maintenance procedures such as catheterizations to put stents in or balloon the vessels.
What made Dr. Leonard such a great doctor for your daughter?
Dr. Leonard was recommended to us by several families whose children have been his patients at RMHC and also in Texas, where he worked for an extended period of time before moving back to Colorado. We have done a lot of research and were relieved to know that we had several great options in-state and out-of-state, but meeting with Dr. Leonard in person made our decision easy. We were deeply impressed by his character, his warm and confident demeanor and his humble approach to his lifesaving work. We were heard and understood; all of our concerns and endless list of questions patiently answered. After every meeting leading up to the surgery, we came away with a peace of mind and confidence that our little girl will be in the most competent and experienced hands.
How is your daughter doing today?
We have been blessed — God has been carefully watching over our little girl. She had the swiftest and smoothest recovery and was discharged to go home on the minimal amount of medication and oxygen. At one month old, she is off of oxygen; taking a routine dose of aspirin and just a bit of precautionary heart pacing medication. We are most grateful that she is a strong baby, and even more so, that we are so lucky to have such an amazing surgical team and hospital close to home.
For more information about the team of dedicated providers and leading specialists at RMHC, call us today at tel:7207541000.