Mary and Mark Vicente always wanted a second child to join their 12-year-old daughter, Billy. The family knew it was a blessing when they found out Mary was pregnant with their son, Dave, in 2011. But only four months into her pregnancy, Mary discovered it would take all of her family’s faith and strength to fight for Dave’s life.
“Dave was diagnosed with hypoplastic left heart syndrome and congenital diaphragmatic hernia when he was still in my womb. From the beginning, we were asked if we wanted to terminate the pregnancy,” Mary recalls. “Every time we stepped into the hospital at home in North Carolina, there was something new, something devastating. We were told that once he was born, Dave would only have 24 hours to live, but we were planning for him and we were going to keep him.”
When Dave was born on May 2, 2012, the Vicentes say, the hospital recommended compassionate care for Dave and there was nothing else that could be done to help him because they felt his heart was irreparable. The family believes Dave was getting the best care possible at the time from his doctors and nurses. But, they asked the hospital to seek second opinions, which they did from two other highly respected institutions, and each time Dave’s case was turned down.
“I was begging every day for surgery for Dave and asking questions. I was deeply hurt when I was questioned about the quality of life I wanted for Dave and that I might be inflicting more pain,” says Mary, who began doing Internet searches looking for answers. “I want parents to know they should never lose hope and should look deeply into their hearts to find the best answer. By chance, or should I say by miracle, I found a doctor at St. Louis Children’s Hospital who took Dave’s case and was willing to try to save a life.”
Mary and Mark first learned about St. Louis Children’s Hospital pediatric cardiothoracic surgeon Pirooz Eghtesady, MD, PhD, by watching a video profile of him on the hospital’s website.
“When I spoke to him, I poured my heart out. I was like a child telling him how emotionally battered we were,” she says. “Going through this situation has been very scary. I struggled to understand, but I did not struggle to trust my own motherly instinct, to trust the Lord and the people He sends to fulfill His promise.”
Within two weeks after Dave’s birth, he was at St. Louis Children’s Hospital and undergoing several surgeries within the first month. “We knew surgery was not an assurance for him to live, but we were so grateful to this doctor and the others that they were willing do something.”
“When I got the call, my first inclination was to say this doesn’t sound good,” Dr. Eghtesady says. “But when I decided to look deeper, I knew it was not necessarily the worst-case scenario, and perhaps an alternative approach was needed.”
At just 19 days old, Dave underwent his first surgery, hybrid palliation, with Dr. Eghtesady and Dr. Balzer. With the hybrid procedure, a band is placed around each of the pulmonary arteries to restrict the amount of blood flow that is diverted to the lungs (and preferentially going to the body). As well, a metal stent is placed in the blood vessel called ductus arteriosus that is artificially kept open after birth with a medication called prostaglandin. The procedure is performed in a modified setting, often called a hybrid lab, wherein the surgeons and cardiologists can work together using the standard surgical tools along with those used for cardiac catheterization, Dr. Eghtesady explains.
And, in June, Dave underwent diaphragm hernia repair with Dr. Warner. “What I did was relatively straightforward,” Dr. Warner says. “But with such strong, wonderful parents who showed such love and courage for their child and the collaborative relationships between our surgeons and clinicians, we were able to help.”
“We needed to get him out of a critical window to allow for his lungs to grow and wait for his next procedure, which will be Norwood surgery when he is 6 to 8 months old,” Dr. Eghtesady says. “He has recently moved out of the ICU and now we are just waiting for him to grow. He will stay here with us until his next operation.”
The Vicentes, who have been living at the Ronald McDonald House, say they are so grateful for all of the care their son and their entire family has received at St. Louis Children’s Hospital and within the community.
Since coming to St. Louis this summer, Mark has given up his job at a nursing home to care for Dave. In August, Mary and their daughter, Billy, returned to North Carolina, where Mary is a special education teacher and Billy is in school. Mary and Billy will return to St. Louis once a month - using Southwest Airlines tickets generously provided to St. Louis Children's Hospital through the Southwest Airlines Medical Transport Grant Program - and use email and Skype to communicate with Mark and Dave when they can not be together.
“When we first found out about the hospital, we didn’t know where St. Louis was or anything about the hospital,” says Mark, who with his family came to the United States from the Philippines several years ago. “But we have been embraced by everyone here at the hospital, our church and members of the Filipino community. St. Louis has become a home for us. And faith helps us through everything.”
Mary and Mark know that Dave has a long, difficult road ahead of him. But they believe Dave’s life has a purpose.
“We are not going to be the same people after this experience. Every day, we have watched Dave fight for his own life. His condition is still up and down, but he is making daily progress,” she says. “The nurses and everyone here love Dave so much. We just wanted to share our story in case there are other babies who need help.”