Charlie is a 4-year-old boy filled with endless amounts of energy, laughter and famous one-liners. He likes to tell stories in the most dramatic manner possible, while flashing a smile that can melt your heart. But under his upbeat personality, he holds a long list of diagnoses and requires eight specialists to care for his health conditions.
At two months old, Charlie was diagnosed with two congenital heart conditions—mitral stenosis and mitral regurgitation—as well as pulmonary hypertension, a type of high blood pressure that affects the arteries to the lungs and the right side of the heart. Within four months, Charlie had three unscheduled open-heart surgeries at Children’s Minnesota to repair, replace and fix his mitral valve. The surgeries he received at Children’s Minnesota saved his life.
Charlie’s stays at Children’s Minnesota didn’t end after that—he has had frequent ongoing hospitalizations. Charlie now receives weekly Hizentra infusions to get stronger and fight back against his illnesses. Even during the most painful procedures, he likes to high-five his stepdad and brag in his most serious face, “I didn’t even cry!” Charlie is currently waiting for his 4th ear surgery in March.
In recognition of American Heart Month, members from the Speak Now for Kids community will share their personal experience of raising a child with a congenital heart defect (CHD). Today, we will hear from Barrett’s dad, Nolan, about Barrett's health journey and how this heart warrior is doing today.
When my wife gave birth to my son, Barrett, we had no idea that anything was out of the ordinary. Her pregnancy had been fairly typical with two normal ultrasounds. She was a strong and healthy 25-year-old woman, and we had no reason to suspect anything was wrong. The long and exhaustive labor started with a two-hour car ride to a Duluth hospital from the North Shore of Minnesota. My son, Barrett, finally arrived after an emergency cesarean — just hours after his due date. He was perfect and we were so excited. We spent that entire day with a newborn that behaved exactly like newborns do: eating like a champ, getting his first bath from the nurses, meeting new friends and family, and filling his diapers.
About 120,000 babies are affected by birth defects each year in the United States. Not only can birth defects lead to lifelong challenges and disabilities, they are also the most common cause of death in infants and the second most common cause of death in children aged 1 to 4 years.
For National Birth Defects Prevention Month, Speak Now for Kids spoke with Carter’s parents, Webb and Courtney, to learn what it’s like to parent a child with a birth defect and how the condition affects her family’s life.
Carter was born with spina bifida. Although spina bifida impacts his life every day, Carter does not let it define who he is. This happy and energetic boy loves school, competitive cooking, playing adaptive sports and, best of all, being a big brother to little brother, Cohen.
At 12 years old, after a few weeks of being sick, Julie learned she had liver failure and seven days to live. She underwent a liver transplant, two angioplasties, and four organ rejections at Cincinnati Children’s Hospital Medical Center on her journey to a full recovery. Fortunately, Julie now has a new relationship with Cincinnati Children’s—as an employee.
Since my liver transplant, I was inspired by the amazing medical staff at Cincinnati Children’s and wanted to become a pediatric gastroenterologist.
Today, I’m a clinical fellow in the gastroenterology division at Cincinnati Children’s. I was given the opportunity to train with a team of excellent physicians with a broad range of knowledge and experience, and a limitless compassion for kids. I’m working alongside my former hepatologist, Dr. William Balistreri—one of many who saved my life many years ago. He has been an amazing role model and inspiration for me.
My dream is coming true—thanks in part to the Children’s Hospitals Graduate Medical Education (CHGME) program. CHGME provides federal funds to children’s hospitals to help train pediatric residents and fellows. This program has helped me and others like me follow our dreams to care for kids. I believe it is critical to train the next generation of physicians who can properly care for children and give them the opportunity to live their lives to the fullest.
Despite not being able to vote in the next presidential election, 16-year-old Joey has been making rounds to meet candidates as they visit his home state. To many, 16 might seem young to be so engaged—but Joey has been a seasoned advocate for years. In fact, he represented Medical University of South Caronia Children’s Hospital (MUSC) at Family Advocacy Day almost 10 years ago!
Even as a 7-year-old at that time, Joey was a strong advocate for children’s health. He was particularly passionate about raising awareness for cystic fibrosis (CF). Joey was born with CF and has spent his whole life seeing the importance of children’s hospitals for kids like him.
That’s why he began volunteering for the for the American Civil Liberties Union’s (ACLU) Rights for All campaign and interviewing candidates on the road. Joey shares his story every chance he gets!
Wow, how the years flew by! On Nov. 6, 2013, Speak Now for Kids was launched. Today, we are a strong community made up of more than 60,000 child health champions just like you.
While today’s kids represent around 25% of the U.S. population, they are 100% of our future. That’s why their health and well-bring must always be a top priority.
Thank you for your continued advocacy for children’s health! Your support has made a huge difference in kids’ lives. During the past six years, you’ve made your voice heard in a big way. In fact, our community has gotten Congress’ attention with a combined total of more than 100,000 email messages, tweets, phone calls, and in-person visits!
Celia was born at 27 weeks. She weighed in at 1 pound 11 ounces. She was diagnosed with lung immaturity and apnea of prematurity, a condition in which breathing repeatedly starts and stops. As a result, she needed to be on a ventilator for several weeks.
“Fortunately, none of Celia’s complications were too severe,” says neonatologist Francis Poulain, M.D. “However, she did remain at UC Davis Children’s Hospital in the neonatal intensive care unit (NICU) for 93 days.”
Great gymnasts have a fierce determination to improve their skills, but Aspen is unstoppable. After a lawnmower accident at her grandparents’ house left her without a right foot, Aspen endured four surgeries and months of recovery. But she always had her eye on the prize: returning to gymnastics.
Aspen received much of her care and treatment at Texas Scottish Rite Hospital for Children. She was under the care of the hospital’s chief of staff emeritus, Tony Herring, M.D., and a full team of child life specialists, physical therapists and prosthetists. “When she went back to gymnastics, she went straight to the balance beam,” Aspen’s mother, Mary, says. “If I could go back and change things now, I wouldn't. She has been an inspiration to me, her family and everyone around her without even trying.”
For Down Syndrome Awareness Month, Speak Now for Kids chatted with Lynn, Will’s mother, to learn about Will and his health journey at Mt. Washington Pediatric Center.
When she was 21 weeks pregnant, Lynne went in for a routine ultrasound. Experts noticed her son’s pinky was small. After a follow-up test, it was determined that her baby, Will, had Down syndrome—or Trisomy 21.
“The first 24 hours were rough,” says Lynne. “We relied on Mt. Washington Pediatric Hospital for the first few weeks of his life. They provided a nurturing environment for us during this stressful period.”
Now 5 years old, Will is doing amazing! He’s currently in kindergarten and loves to sing, dance, play soccer and draw. He is full of energy and enjoys being outside with his brothers.
“He’s a typical toddler,” she says when asked what it’s like being a parent of a child with Down syndrome. “He’s running around everywhere, getting into everything that toddlers get into.”
Wyatt is a typical 4-year-old. He loves LEGOs, watching baseball and playing fetch with his dog. But, unlike most kids his age, Wyatt has a rare form of dwarfism—he has had to overcome many obstacles in his young life. For National Dwarfism Awareness Month, Speak Now for Kids chatted with Jenn, Wyatt’s mother, to learn about Wyatt and his health journey at Children’s Healthcare of Atlanta.
It wasn’t until my son, Wyatt, was 10 weeks old that doctors discovered he has significant spinal cord stenosis. His doctors were unsure if surgery was needed to prevent further damage to his spinal cord.
A temporary solution was introduced, and Wyatt was fitted with a cervical neck brace to see if any damage to his spinal cord could be reversed. Because Wyatt was so little, the specialists had a hard time finding a cervical collar small enough to fit his tiny neck. Coincidently, Wyatt’s dad worked for a surgical equipment company that specializes in spinal implants. With the help of donations from his employer, Kevin began making his own cervical braces for Wyatt at home.
To have a place like Children’s Healthcare of Atlanta (CHOA), where the specialists are all in one place, is so important. With the help of weekly physicals, occupational and speech therapists, and close observation by numerous specialists, Wyatt is now a thriving toddler!