“You’re the best mom ever,” is music to any mother’s ears. But when 6-year-old Lincoln spoke these words to his mom, Amber, for the first time just a few weeks ago, she totally lost it — in a good way.
“I never thought he’d be able to say that,” Amber says. “Thanks to his team at Boston Children’s Hospital, he’s come so far in just a few years.”
From hospice to hope
Lincoln was born in May of 2012 with a number of heart defects, including tetralogy of Fallot with pulmonary atresia, major aortopulmonary arteries, a hypoplastic left ventricle and parachute mitral valve. He spent his first few years fighting for his life, and at one point, his doctors in Michigan told Amber and her husband, Ed, that they thought it was time to let Lincoln go. But after Lincoln was discharged to hospice care and was holding his own after a year with no medical follow-up, they decided to get a second opinion.
“Despite all the doctors’ predictions, he was still alive and breathing,” says Amber. “I didn’t want to give up on him.” She read online about another family who had traveled to Boston Children’s for heart care, and decided to reach out. That’s how she found Dr. Puja Banka.
“Dr. Banka has been our guiding light through the whole process,” says Amber. “We’ve made seven trips to Boston in the past four years, and he’s had two surgeries there. Not only were they able to repair his heart, but he’s also grown by leaps and bounds after each surgery.”
After surgery, a shift to developmental needs
Once Lincoln’s medical needs were under control, Dr. Banka suggested working with the Cardiac Neurodevelopmental Program (CNP) to help him with his language and motor skills.
“Dr. Sam confirmed that Lincoln’s body had been working so hard just to survive that he didn’t have a chance to work on those normal kid milestones.”
“He was developmentally delayed, but we didn’t know if it was due to a stroke he had when he was 2 months old or if it was just from everything else he had been through,” says Amber. “I wanted someone in Boston to see what was going on.”
During a visit to Boston, they met with psychologist Dr. Samantha Butler of the CNP. “Dr. Sam confirmed that his body had been working so hard just to survive that he didn’t have a chance to work on those normal kid milestones.” Dr. Butler helped the family understand Lincoln’s strengths and weaknesses and how to support him in making developmental progress, including which therapies would be helpful.
After taking an extra year in preschool, Lincoln started kindergarten this year, another huge milestone. “We never thought he’d make it this far,” says Amber. “He’s in a collaborative room where he gets one-on-one care when he needs it. He loves it and is just so happy.”
‘Hearts in the Classroom’
At the beginning of the school year, Dr. Catherine Ullman Shade, director of education for the CNP had a virtual conference with Lincoln’s entire team at school through a program she runs called “Hearts in the Classroom.”
“I saw the flyer during our last trip to Boston and thought how great it would be for his school to get information about his developmental path from the institution that saved him,” says Amber. The meeting was held in a meeting room at the school where Lincoln’s whole team could watch Dr. Ullman Shade’s presentation.
Amber says the presentation was helpful for her as well as his teachers and school team.
“I learned some things I didn’t know, like these kids have slower processing skills, which explained why Lincoln is sometimes slow to catch on to things at home.” She says that his teacher was able to take something from each section Dr. Ullman Shade discussed to work on with Lincoln in class. And he’s already made progress. Amber says he’s really started to understand letters and his speech has exploded over the past few months.
Singing, cooking and running bases
Outside of school Lincoln is also gaining confidence. This past year, he enrolled in his first season of Miracle League baseball and loved running the bases. He also loves helping his dad cook and listening to music. Now that he’s verbal, he loves singing along, too. His favorite song? “My House” by Flo Rida. “The first time we heard him singing that song, we were just blown away.”
Learn more about the Cardiac Neurodevelopmental Program.