Robby's Story: Tetralogy of Fallot
Robby Motta was born with Tetralogy of Fallot—four defects within his heart. Eight years later, Robby is an active second-grader.
While Robby's condition still has to be monitored, he's an 8-year-old who loves to draw and write stories.
Ron and Jill Motta with their children Robby and Gabriella.
Last May, Robby Motta walked three miles on his own at an event to raise money for the Children’s Heart Foundation.
We didn’t understand why this was happening. Other families get to take their babies home, why couldn’t we?
Robby's parents, Ron and Jill Motta
“We found something.”
These are words no expectant parent wants to hear. Yet those were the words of a doctor five months into Jill’s pregnancy. And those words changed everything.
Our first child had a heart defect called Tetralogy of Fallot. People with this condition have four defects within the heart: a hole in the wall dividing the chambers, a thickening of the pulmonary artery, a thickening of the ventricular walls and an overriding aorta. The doctor explained everything to us, but we heard little beyond “the baby has a heart defect.”
We sprang into action. We switched OB/GYNs to one who specialized in high-risk pregnancies. We then figured out where we were going to give birth. After much research, thought and consultation, we settled on Columbia-Presbyterian’s renowned Babies & Children’s Hospital in Manhattan.
On Jan. 11, 2006, Jill went into labor—a month early. After three trips to the hospital over two days, our beautiful son Robert Anthony was born on Jan. 13. We were denied the bonding time most parents enjoy with their newborns—we only briefly held Robby before he was whisked off to the NICU, where he spent the next three weeks. We also had concerns that other families don’t, such as worrying about our son’s oxygenation levels, blood pressure and bilirubin count. Worst of all, Robby wasn’t crying or feeding as a baby should—his heart was so overworked that he was too tired to cry.
We didn’t understand why this was happening. Other families get to take their babies home, why couldn’t we? We were at the NICU from morning until night. We’d return home, Robby’s empty crib a constant reminder of the distress our beautiful boy was in. The compassion and dedication of the hospital’s NICU staff—from Robby’s amazing cardiologist, Dr. Julie Glickstein, to the nurses who so dutifully attended to him—became our lifeline. They would often provide comfort, cheer us up and, more importantly, reinforce that Robby was in good hands.
Finally, after nearly four weeks, Robby was allowed to come home for the first time. Jill learned how to remove and insert a feeding tube through his nose, using a stethoscope to listen to Robby’s stomach to make sure the tube was there. Nursing wasn’t an option (although Jill pumped breast milk) and Robby couldn’t even make his way through half a bottle. We frequently had to “gavage”—force feed the milk through his feeding tube. On top of that, whenever Robby cried, we had to quickly comfort him for fear that he would turn blue. The plan was to do his Tet repair at six months—plenty of time for him to gain weight, build up his immune system and basically be ready to tackle the next stop on his difficult journey. However, as we found throughout this ordeal, the universe had other plans. When Jill took six-week-old Robby to his pediatrician for routine shots, he cried so hard that he turned blue. The next day, Dr. Glickstein took one listen to Robby’s heart and made the decision to do his Tet repair, even though Robby was well shy of six months.
What followed was the most difficult day of our lives. On Feb. 27, Jill and I handed our 6-week-old son to Dr. Ralph Mosca, one of the best infant heart surgeons in the country. We knew Robby would be in great hands, but even that couldn’t guarantee a positive outcome. When Dr. Mosca emerged eight hours later and told us the operation was a success, we were elated.
We still weren’t out of the woods, however. That night, as we slept on the narrow window bench in Robby’s room in the PICU, we were jarred awake by alarm bells. We woke to see a team of doctors swarming over Robby, all with grave looks on their faces. The heart monitor was beeping with a quick rhythm instead of a slow and steady one and Robby’s blood pressure was dropping. Robby was experiencing tachycardia—a heart rate that’s too fast—and the doctors didn’t know what to do. They decided to put Robby in a medically-induced coma so he wouldn’t try and work against the ventilator he was on. When I asked one of the doctors if Robby would make it through the night, he could only say, “I don’t know.”
Fortunately, Robby DID make it through the night, and through the next week. He was gradually brought out of his coma and released from the hospital a week after his surgery. When we brought him home, we heard something that we hadn’t heard in more than six weeks: a loud, mighty cry. Jill and I practically burst into tears—this was not the weak wail of a baby who barely had the strength to make a noise. Robby also began to eat and nurse properly. Soon, he was acting like a normal, healthy baby.
Eight years later, Robby is living the normal life of a second-grader. He still has to be monitored, and he had surgery in 2009 to insert an occluder septal device into his heart. But he runs around with his friends, his sister Gabriella and his dog. He loves to draw, to create stories and, above all, he loves his family. Robby even embraces what he calls his “special heart”—and explains the reason for his scar to anyone who asks. And in May 2013, Robby did something pretty amazing: He walked three miles without help to raise money for the Children's Heart Foundation. Not bad for a kid we weren’t sure would make it through the night!
It was a long, difficult road, and it still is at times. We always get nervous whenever it’s time for Robby’s annual cardiac checkup and we don’t breathe easy until Dr. Glickstein says, “See you next year.” But we wouldn’t change a thing about Robby. His experience is part of who he is, and we love every part of him—unconditionally.
And we always will.
-- Ron and Jill Motta