My Voice Matters: Being the voice
The Center for Disease Control and Prevention estimates that 40,000 infants in the United States are born with congenital heart defects (CHD) each year, and of those, 7200 cases are critical. In many cases, congenital heart defects are asymptomatic, and without receiving the pulse oximetry test, a simple, noninvasive procedure, this very serious condition could go undiagnosed.
In 2012, New Hampshire legislators passed SB 348, Parker’s Law, adding the pulse oximetry test to the medical screenings required for newborns, thanks to Casey Bolton, the perseverant mother of one amazing little boy named Parker.
Casey and Keith Bolton left their 20-week ultrasound so excited to learn the gender of their baby that they painted their nursery blue that same night. When doctors asked them to come back for another ultrasound two weeks later, the couple was elated to see their baby boy again.
“We planned to have him well in advance of conceiving him,” Casey said. “We were at our healthiest and really felt good.”
But when the couple received a phone call requesting that they set up a genetic counseling appointment and a fetal echo cardiogram with a cardiologist, red flags were raised. On September 8, 2008, Casey and Keith found out that their child was going to be born very sick.
“When we left the office that day, we actually just had a napkin with hypoplastic left heart syndrome written on it,” Casey said. “So we had to go home and Google it for ourselves.”
The quick internet search stunned the couple; they had never considered that their child could be born terminally ill. Casey gave birth to Parker in Boston, but his condition was more serious than the doctors had thought. He went through his first procedure at just one-hour-old, and for the first 24 hours of Parker’s life, his parents couldn’t hold, touch or even see him. The Boltons spent the first three and a half months of Parker’s life in the hospital.
Fast forward seven years. Parker is an animated boy who loves his dog, cars and making people laugh. But it hasn’t been an easy road.
“He couldn’t tell us when he was in pain,” Casey said. “So, we wanted to be the voice to make sure that he was well cared for, and we advocated for his needs, knowing he couldn’t advocate for his needs.”
Casey was first frustrated that she wasn’t able to find a cardiac pediatrician in the state, but she always stood her ground, advocating for Parker’s specific needs. In the end, it paid off. Parker’s pediatrician at Children’s Hospital at Dartmouth-Hitchcock worked closely with cardiologists to ensure that he was answering the Boltons’ questions and giving Parker the greatest care possible.
“On paper, Parker does look intimidating,” Casey said. “To meet Parker, there’s no intimidation. He’s just an amazing child.”
Casey and Keith have fought endlessly with insurance, pharmacies and facilities to guarantee that Parker could get everything he needed. They consulted with parents across the country dealing with the same illness and always asked for second and third opinions from medical professionals when they weren’t completely sure about a suggested treatment.
Advocacy didn’t end at Parker’s needs, though. Casey began working on building awareness surrounding Parker’s condition. She held events and spoke in malls and hospitals. She facilitated awareness benefits for families and received a seven-year proclamation from the governor for Congenital Heart Defects Awareness Week.
“It is a silent killer,” Casey said. “Children with congenital heart defects don’t look sick.”
After watching her son grow into such a positive, happy child with a great quality of life, Casey wanted everyone to know about CHD. She didn’t want another parent to walk out of their doctor’s office with a diagnosis on a napkin.
In 2010, Casey read about other states that were advocating for requiring that newborns receive the pulse oximetry test, which would test for the seven critical CHDs. Casey knew that presenting a similar bill in New Hampshire could save lives.
“I didn’t know that my voice would make a difference, but I definitely wanted to push for it,” Casey said.
Casey wrote to legislators and buckled in for a long ride. She experienced the ins and outs of the legislative process, at times finding herself discouraged. After tireless months of speaking up for Granite State children through her son’s story, Casey’s perseverance paid off. The New Hampshire legislature passed Parker’s Law in August 2012.
“It feels amazing to know that children won’t go home and pass in their parents’ care because of a simple test that can be done at the hospitals,” Casey said.
From their own household to their doctor’s office to the New Hampshire legislature, the Boltons have advocated for their son from the very start. Casey wasn’t always sure her efforts would pay off, and speaking with doctors and legislators could be intimidating, but she knew she had to try.
“Never be afraid to speak up when you’re dealing with anyone in the professional field,” Casey said. “Always stick up for [your children] because you never know, maybe they just weren’t thinking of it at that time.”
Through years of advocacy, Casey knows her son and his needs well. And her story shows just how much her voice matters.
Join our campaign to provide Granite State parents the knowledge and resources they need to advocate for their families and children. Visit MyVoiceMattersNH.org for more information.
Do you have a story about using your voice to stick up for your children? Email Janine Mitchell at [email protected] with your story!