It’s nap time in the neonatal intensive care unit (NICU) at Texas Children’s Hospital. Dane Scott Sanford, a tiny patient, is resting comfortably in his crib, his red hair the same color as the dinosaurs on his onesie.
On this day, Texas Children’s music therapist Alix Brickley is recording Dane’s heartbeat to create an original song for his family.
“The heartbeat recording is something that is really unique,” Brickley said. “To be able to give that to families, especially families that don’t get to go home with their kids, to give them that little bit of their child back is something special.”
The heartbeat recording program was founded in 2016 by music therapist Marial Biard to give families of critically ill children a lasting gift.
It hasn’t been an easy few months for Dane and his family. Delivered at 34 weeks, Dane was born with a large omphalocele, a congenital abnormality that causes the abdominal organs to protrude out of the belly through an opening around the umbilical cord.
“He had surgery every other day for the first two weeks of his life to try and get all of his organs inside,” said Sarah Sanford, Dane’s mother.
Music therapy has become a positive force for the Sanfords during Dane’s stay in the NICU.
“The first month of his life … everything was very negative around him, but once the music therapy came it was something positive for him and he loved it,” Sarah said. “I wanted to get the recording for something for him to remember and to show the babies how much they have been through and how far they have come.”
Sarah chose the song “Hey Look Ma, I Made It,” by Panic! at the Disco, for Dane’s recording. Brickley captured Dane’s heartbeat with a digital stethoscope connected to an iPad and took the recording to the Texas Children’s recording studio to create an original song.
“The heartbeat is like a drum beat … It just keeps going and I build the song on top of it,” Brickley said. “We make the music from scratch and sing the lyrics to the songs and I play the guitar and keyboard to individualize each song as much as possible.”
While Brickley is usually asked to record songs like “Twinkle, Twinkle, Little Star” and “You are my Sunshine” for her NICU patients, she’s happy to accommodate any song request and adapt the words to fit each situation.
“It’s the best part of my job. … Getting to provide something tangible … something that these families can have forever,” Brickley said. “Even when it is a really sad situation, they are still getting that moment to share with the family. It is something that will last well beyond my time with them.”
Since Dane was born, Sarah and her husband, Drace, who live near The Woodlands, have been splitting their days to be with Dane around the clock. Dane’s condition at birth should not affect his health as he gets older.
“Some of his organs are in the wrong place, but it shouldn’t matter as long as they are in,” Sarah said. “He also may or may not have a belly button, but it will all be part of his story.”
Although Dane’s doctors expect he will have to stay in the NICU for a few more months, Sarah and Drace are thankful their baby will be home soon.
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