Mending Broken Hearts (part 2)
When Patti Wilson was pregnant with her daughter Melanie in 1980, health care and technology looked a whole lot different than it does today.
Routine sonograms did not exist and there was no way for expectant mothers to know whether anything was wrong with their baby until the child was born. Up until labor, Patti's pregnancy had been text book and no one had any reason to suspect anything was wrong with Melanie.
However, on June 3, 1980, when Patti went into labor, everything changed.
Doctors began noticing Melanie's heart would stop every time Patti had a contraction. They originally thought the umbilical cord was wrapped around Melanie's neck, but after an emergency C-section was performed, Patti and her husband learned their newborn baby girl was facing a life-threatening diagnosis.
The day after Melanie was born; she was transferred to Cook Children's, which was called Fort Worth Children's at the time. The prognosis Melanie's parents received was bleak.
At 5 days old, Melanie had her first heart catheterization. This first procedure allowed doctors to diagnose Melanie with a combination of congenital heart defects that included transposition of the great arteries, ventricular septal defect and pulmonary stenosis. She would need multiple procedures to fix the structural abnormalities in her heart but the catheterization temporarily fixed the problem to postpone surgery as long as possible.
Melanie was a year old when she had her first open heart surgery at Cook Children's. The procedure was called the Rastelli procedure and the surgeon performing the surgery had practiced under Giancarlo Rastelli himself before coming to Cook Children's. Throughout her life, Melanie had additional surgeries at 3, 10, 16 and 27 years old. She also underwent multiple heart catheterizations and procedures.
Over the years, Cook Children's has become a home away from home and Cook Children's cardiologist Richard Readinger, M.D., who has followed Melanie since she was 8 years old, feels more like a family member a doctor.
When asked about how her diagnosis affected her life as a child, Melanie said it was all she ever knew. She learned about her diagnosis as a child learns most things – by experiencing it as time goes on. At age 11, James "Hud" Allender, M.D., another Cook Children's cardiologist, sat her down to explain that her mom may not always be with her if there is an emergency and she must know and understand her own diagnosis. It was at this point that Melanie remembers truly understanding what she had been coping with up until then.
Since her last procedure at age 27, Melanie has had no complications. Even though she's an adult, she continues to be followed by cardiologists at Cook Children's who are skilled in treating patients of all ages with congenital heart defects. With the continued advancements in pediatric cardiology, children with congenital heart defects are not only surviving, but growing up to become adults who lead rich, full lives. Cook Children's Adult Congenital Heart Disease program is one of only a few formal programs nationwide to offer inpatient and outpatient care for patients from the moment they are born all the way into adulthood. But the story doesn't end there.
Due to Melanie's diagnosis, she was told that pregnancy would likely be too risky. Her doctors were unsure if her heart would be strong enough to carry a baby to term.
But, some things are left to fate and Melanie began to have vivid dreams that she was feeding twin girls that she knew had to be her own. She would wake up absolutely bewildered because she knew it wasn't a possibility. Fast forward a few weeks and Melanie and her husband found out the shocking news that she was pregnant.
Melanie immediately made an appointment with Dr. Readinger where he performed an EKG, echocardiogram and an exam and said, "It's the strangest thing. Your heart appears to be in the best shape it's ever been in. If you're going to have a baby, now is the time." The sonogram revealed that Melanie was actually pregnant with twins as her dreams suggested. Unfortunately the one baby's heart never fully formed and at 8 weeks another sonogram revealed that the baby had been absorbed.
Having wanted to create a girl name from two men's names, Melanie and her husband already had a plan when they found out 15 weeks into the pregnancy that they would have a baby girl. Rossleigh is named after her great grandfather, Ross, and her grandfather, David Lee.
Melanie's pregnancy went smoothly physically, but it was incredibly draining emotionally. At the beginning, Melanie and her husband felt as if they were only receiving disheartening news. At week 18, the couple was informed that there was an issue with Rossleigh's heart and the perinatologist could only see one kidney. Luckily, her second kidney would be detected on a later sonogram.
At week 22, a fetal echo was performed at Cook Children's where cardiologists could diagnose Rossleigh's heart defect while she was still inside Melanie. Fetal echocardiography didn't exist when Melanie was born. A fetal echo allows doctors to see a baby's heart while it's still in the womb. Doctors can make the diagnosis and work with the surgical team to come up with a treatment plan even before birth. This technology gives the gift of time, both for the surgical team and for the family.
When the fetal echo was performed, Rossleigh was originally diagnosed with Truncus Arteriosus with a ventricular septal defect but at birth, that diagnosis would change.
Rossleigh Claire Dewey was born on Sept. 26, 2012 and was immediately transferred to the Neonatal Intensive Care Unit at Cook Children's. An echocardiogram would show that her diagnosis was actually Tetralogy of Fallot and pulmonary atresia. Only five days after birth, Vincent Tam, M.D., Cook Children's medical director of Cardiothoracic Surgery, operated on Rossleigh's heart. She stayed in the hospital for 29 days, ironically, in the exact same surgery recovery room that Melanie had stayed in after her most recent surgery, and has had no procedures since. She could end up needing another procedure in her teenage years but right now, she is living life like any other 5 year old.
The bond between a mother and daughter is always special and unique, but Melanie and Rossleigh's bond is even more unique because of their shared experiences.
These days, because both Melanie and Rossleigh are still being followed by Dr. Readinger, they have annual mother-daughter cardiology appointments. Melanie said that while one is getting their echo, the other will hang out in the waiting room and vice versa. A unique mother-daughter experience that most don't have to share but they make the best out of a tough situation.
The Dewey family is forever grateful to Dr. Readinger and the care and compassion that he has shown both Melanie and Rossleigh throughout their medical journey. Melanie bragged on his ability to appropriately explain and literally sketch out the most complicated situations to both generations of heart patients.
Even though nearing retirement age, Dr. Readinger wanted to be the one to treat Rossleigh so that he could be involved in both of their care. He has made a great impact on their lives and the family is forever thankful.
As Melanie reflected back on everything she's been through, she explained, "I have such a unique viewpoint going into this situation. I've been on both sides, as a patient who was scared to go into their own heart surgery, as well as the mom of a child with heart issues. Both are frightening in their own ways but I was able to gain the courage to push through these circumstances because of my faith and an amazing team of skilled doctors in nurses."
As we look back over Cook Children's 100 year history, Melanie's story is proof of not only how many medical advancements have been made but how things are literally changing each and every day. If Melanie was born 10 years earlier, the Rastelli procedure wouldn't have existed and she would have died as an infant. However, if she was born 10 years later, she would have been able to undergo a newer procedure, at the time, called the Nikaidoh procedure where they could easily switch the two sides of the heart. It's likely she would have needed just the one surgery rather than five. Plus, she would have had the added benefit of the experience of Dr. Tam and Hisashi Nikaidoh, M.D., who created the procedure, and have the largest combined experience of aortic translocations in North America.
These advancements are even more apparent with Rossleigh's journey thus far.
All of these medical advancements are not taken for granted at Cook Children's and we know that we could not have made these strides without your help. Our generous donors and supportive community allow us to help Melanie and Rossleigh to live their lives to the fullest, despite their complications. As you join in our celebration of 100 years, remember who we are really celebrating – patients like Melanie and Rossleigh, and also, you. Thank you for being the 1 in our 100.