Jose and Maria Del Pilar Dominguez have a photo album that chronicles their 7-month-old son’s life-threatening experience in Columbia Presbyterian Hospital, which resulted in a successful heart transplant this past Christmas Day.
The photos were taken before and after Andrew’s heart transplant, which he underwent at 5-months-old. Every photo shows Andrew on a bed, sometimes with wires hooked up to machines attached to him, but he is always smiling.
Andrew’s smile served as a sign of hope that he would make it through the procedure. But after already losing their first-born child, Catalina, to the same condition, his parents feared the worst.
“Five years ago, we had a baby daughter [Catalina] with the same problem as Andrew – a dilated cardiomyopathy, or an enlarged, weak heart. Her case was a lot more severe and she only made it through eight days in the clinic. She passed away on May 11, 2006, my birthday,” said Maria.
Having already experienced such a tragedy, Maria did not take any chances when she felt Andrew’s condition was far more serious than doctors initially suggested.
“I recognized some of the same symptoms that Catalina had in Andrew. We became very nervous and took him to Stonybrook Hospital to get checked. That’s when we found out that Andrew also had an enlarged and weakened heart,” she said.
According to Jose, doctors at Stonybrook initially shrugged off the case and dismissed it as a cold of some sort. Both parents pleaded with doctors to take X-rays and the baby was then transferred to Columbia Presbyterian Hospital and stayed there from October 4 to January 14.
“Seeing him with all the wires was the hardest part. That point was very scary because he is too little and he cannot tell you how he is feeling,” said Jose.
The Christmas morning transplant was not an easy procedure. There were four hearts available but there are a lot of conditions that had to be kept in mind; the baby’s age, weight and blood type. The first heart was too big, the second too small and the third didn’t function with Andrew’s body. The fourth attempt proved to be a success.
Jose referred to the successful transplant as a “beautiful miracle.”
“Throughout December, the doctors and nurses kept telling me that he’d get his heart for Christmas and coincidentally a heart was available that very day. It was as if he was born again,” said Maria. “Being in this country definitely made a difference to Andrew’s survival and recovery. In Columbia [the family’s native country] the doctors gave me no options for Catalina – they simply told me she had 72 hours to die.”
At home, Andrew eats “like a horse” and is always smiling.
“He’s constantly smiling. The medical staff was confused to see a baby smile while given shots,” said Maria.
Though Andrew has not suffered any setbacks to date and is expected to live a normal, healthy life, his family has been hampered financially and emotionally.
The family lives in Farmingville and they are currently looking for a home closer to the hospital, ideally somewhere in Queens.
“My husband is going to start working again soon, my mother [Gloria Sanchez] is heading back to Columbia in April, and my daughter is a senior in high school – it’ll be difficult to have to make that commute by myself with my two sons,” Maria said.
A full-time truck driver and sole provider for his family, which also consists of a healthy 2-year-old son named Matthew and an 18-year-old stepdaughter, Angelica, Jose was left trying to figure out ways to pay for his son’s home care needs. His insurance has covered 95 percent of the medical expenses. The cost of the operation was $12,500 and hospital expenses have cost approximately $50,000 so far.
Jose is employed by LT Associates, Inc. and is a colleague of Carl Amato, one of the board members of Angels on the Bay, a non-profit organization dedicated to helping chronically ill, developmentally disabled and physically challenged children.
“Jose was speaking to everyone he knew, seeking help for his son,” said Amato, who heard the story of Andrew and immediately knew that Angels on the Bay could help.
Angels on the Bay, located in Howard Beach, started working with St. Mary’s Healthcare System for Children. Three weeks after his life-changing surgery, Andrew was discharged from Columbia Presbyterian Hospital to recover at home with his family.
St. Mary’s Healthcare System for Children, located in Bayside, helped transition the Dominguez family home and managed Andrew’s complex medical needs. Post-transplant care may include skilled nursing visits, education and training for the parents on how to care for their child’s medical condition, medication compliance in administering upwards of 15 medications a day and home health aide services.
“It takes a community to make sure that a child with special needs gets every opportunity to lead a healthy life,” said Jack Notaro, head of the St. Mary’s committee of Angels on the Bay.
St Mary’s Healthcare System for Children absorbed Andrew’s home care costs.
“I want to specifically thank God for making this miracle possible. But I also have to thank Frank Lizza and his brother John, Ramon and St. Mary’s, Angels on the Bay and Carl,” Jose said.
Though he cannot yet express it in words, Andrew’s older brother, Matthew is extremely thankful as well. According to Jose, the toddler checks on his younger sibling every morning to make sure he is OK.