The DoSeum is San Antonio's only museum just for children where kids learn by doing, creating and tinkering, instead of just looking and listening.
In January the Serrentino family from Sugarland, Texas visited San Antonio for two reasons: first, to get their son’s annual heart scan, and second, to celebrate his good health with a trip to The DoSeum. Their post-doctor-appointment Doseum day has become something of a family tradition, and today, Jackson is a beaming three-year-old boy with no sign of the dangerous heart defects that troubled him as a newborn.
“The DoSeum holds a lot of good memories for us,” said Amanda, Jackson’s mother. “We’ve been coming here [to The DoSeum] since Jackson could crawl and watching his interests evolve from Little Town to the piano stairs and, this time, dressing up like a Superman wizard.”
Amanda, a photographer, documented this year’s joyous Doseum day with her DLSR camera and shared it on Instagram. The image of Jackson and father, Jose, standing beneath twinkly winter lights will make your heart melt. It also prompted us to ask about their story, and Amanda was kind enough to share it.
Jose and Amanda Serrentino, then living in Midland, weren’t expecting anything out of the ordinary as they waited for their first child to arrive. Afterall, Amanda had had a healthy, full-term pregnancy. But troubles arose as soon as Jackson was delivered. First, fluid in his lungs forced doctors to put him on a ventilator, and then, even after his lungs had cleared, he wasn’t breathing normally. Lacking the right equipment to diagnose his condition at the rural hospital, they transferred Amanda and Jackson to another clinic 30 miles away at two in the morning, just hours after his birth. Finally, there, the only pediatric cardiologist in the Midland area scanned his heart and delivered the news: Jackson had multiple forms of congenital heart disease, a condition that only effects one percent of the population.
Two days after his birth, Amanda (who, by the way, was recovering from a cesarean section herself) and ventilator-stricken Jackson were boarding a plane for San Antonio to receive treatment at Methodist Hospital.
“I remember the moment when we learned we had to get treatment immediately,” Amanda said. “It was surreal. I couldn’t even process the information.”
In San Antonio, they met with a pediatric specialist, who was able to give them a more specific diagnosis: Jackson had a pinched vessel between his heart and lungs that restricted blood flow and was taxing his heart. The doctor was able to open up the pinched vessel without major surgery. However, after the operation, Jackson still wasn’t well.
At this point, the Serrentinos decided that living in west Texas was not working. They needed to be close to San Antonio, where they could easily access medical services for Jackson. So, in the midst of trying to untangle what was happening with Jackson’s heart, they moved across the state to San Antonio.
Jackson lived at the Methodist Hospital off and on for about one month as they waited for answers. In that time, they formed a close bond with the doctor treating Jackson.
“That first Christmas, when Jackson was still in the hospital, was tough,” said Amanda. “She [the pediatric cardiologist] hosted us for Christmas and made us feel like we had a home in San Antonio.”
During his long stay, doctors tried to get a closer look by inserting a tube with a camera attached that went through his arm straight to his heart. They still couldn’t get a clear picture of the tiny mechanisms inside Jackson’s heart.
With the San Antonio doctors at their wit’s end, the Serrentinos looked towards the Texas Children’s Hospital in Houston for a diagnosis. Jackson, then two months old, met with one of the state’s best pediatric specialist, a veteran cardiologist with 30 years of experience, who happened to have been born on the same street in west Texas where the Serrentinos had previously lived.
“It was such a crazy, crazy coincidence,” Amanda remembers. “When we made that connection, I knew we were in good hands.”
On Friday Jackson was examined, and on Tuesday he had open-heart surgery. The doctor had discovered a hole in Jackson’s heart, a condition called Ventricular Septal Defect (VSD). He also suspected a misfit mitral valve—one of the “doors” in the heart that lets blood flow from one area of the heart to another—essential in making sure enough oxygen gets in the blood. The Serrentinos had been warned that this second condition meant Jackson would need open-heart surgery every few years in order to replace the mitral valve, or “door,” as his heart grew, probably until he was an adult.
They were relieved to finally have answers.
Then, after the surgery, there was even better news. The doctor hadn’t found a misfit mitral valve, but instead, an extra valve which had been hindering the movement of the one next to it. He simply snipped the second valve and—voila!—Jackson was cured. The Serrentinos went home with the promise that Jackson wouldn’t need another heart surgery.
“Every mother has a miracle baby, but after going through all of those trials, Jackson really was our miracle baby,” said Amanda.
It wasn’t long after his recovery in the fall of 2015 that Amanda heard about the new DoSeum. Jackson was crawling at the time and enjoyed playing in Little Town. Soon enough, it became a regular hangout.
Jose’s company eventually transferred the Serrentinos to the Houston area in 2016. A year later, they had their second child, Katie, who is now five months old and, fortunately, does not suffer from any of her brother’s heart conditions.
After Jackson’s heart scan this January, he was completely cleared to play all sports and participate in any kind of activity. Amanda sees his interests gravitating towards music, as he loves to listen to classical violin, and Amanda says, “what you would think of as the more boring Disney songs.”
We look forward to hearing him play piano stairs next year.
February is American Heart Month, and great time to learn more about the fight against heart disease. Visit www.heart.org for more information.
Photo Credit: Amanda Serrentino