Paige looks like a typical toddler, a happy 4-year-old filled with laughter and boundless energy. The little plastic t-shaped device attached from her neck is the only thing that gives away what is decidedly different about this lovable kid.
It is a tracheostomy tube — trach tube for short — that is inserted into a hole in her neck and windpipe, allowing her to do what most people take for granted: breath.
“Ordinarily, babies come out knowing how to breathe,” says Paige’s mom, Amber. “Paige didn’t. She’s learning to breathe from her mouth and nose.” The trach tube was put in at Hasbro Children’s Hospital, where Paige is in the hospital’s ventilator integration program (VIP), which provides medical care for infants, children and adolescents with chronic respiratory problems and those dependent on medical technology.
Paige was born with a giant omphalocele, a type of abdominal wall defect where the bowel, liver and other abdominal organs protrude out of the abdomen into the base of the umbilical cord. “Because of that, her lungs didn’t develop normally, and the blood vessels didn’t develop normally during her prenatal life,” says Dr. Karen Daigle, director of the Hasbro Children’s Hospital VIP program. “As a result, she’s had signiﬁcant surgical issues and was very sick as a newborn. She developed chronic respiratory failure and was on a ventilator.”
Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week, we spoke with 2018 Family Advocacy Day alum Charlie’s mom, Shelby, to learn how Medicaid helps her family.
Charlie is a 3-year-old little boy filled with endless amounts of energy, laughter and silly comments. Under his sweet smile, he holds a long list of diagnoses and requires eight specialists for his conditions.
At two months old, Charlie was diagnosed with two congenital heart conditions — mitral stenosis and mitral regurgitation — and pulmonary hypertension, a type of high blood pressure that affects the arteries 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.
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.
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 disability, they are also the most common cause of death in infants and the second most common cause of death in children aged one to four years
January is National Birth Defects Prevention Month. The theme for 2019 is “Best for You. Best for Baby.” We know that not all birth defects can be prevented. But you can increase your chances of having a healthy baby by doing what you can to be your healthiest self both before and during pregnancy. See the five tips for preventing birth defects below to learn what is best for you and best for your baby:
Grace, 10 years old, is a strong-willed and determined fighter. She needed those traits to battle acute myeloid leukemia, a type of cancer that affects the blood and bone marrow.
Grace was admitted to Children’s Hospital and Medical Center almost two years ago, and it quickly became home for her and her family. The hospital team provided coordinated care to save Grace from this toxic and life-threatening disease. Grace not only received chemotherapy as an oncology patient, she also worked with the teachers at Children’s to stay on top of her education.
“There is no way that any family, regardless of their income, could afford to have a child in the hospital long-term,” her mom says. Grace relies on Medicaid to access treatments and drugs that her primary plan didn’t cover. This is why Grace and her family represented Children’s on Capitol Hill in October to share information about her health journey and the importance of Medicaid with members of Congress.
Speak Now for Kids is celebrating Diabetes Awareness Month in November to raise awareness about diabetes risk factors and encourage people to make healthy changes. This week, we spoke with Sarah about her experience of parenting son, Samson, who was diagnosed with type 1 diabetes.
About 30.3 million people in the United States have diabetes — it is one of the leading causes of disability and death. Yet, one in four people with diabetes don’t know they have the disease. Diabetes can cause blindness, nerve damage, kidney disease and other health problems if not controlled. But thankfully, people with diabetes can properly manage the disease by living a healthy lifestyle.
My son, Samson, was diagnosed with type 1 diabetes (also known as juvenile diabetes) about two weeks before his second birthday, after we had contacted his pediatrician about to his frequent urination and weight loss. Shocked and confused at first, we were blessed to have a wonderfully encouraging team ready to take care of us when we arrived at St. Joseph’s Children’s Hospital. Our endocrinologist, Dr. Grace Dougan, and our diabetes educator, Juliana Hite, gave us lots of support and listened to our questions and concerns. They reassured us repeatedly that Samson would live a healthy and active life, and he does.
Alex bravely reaches towards the future. Though his parents feared he might not survive his early years, Alex has faced his medical challenges head on and learned to prosper in spite of them.
Like his sister, Maddy, Alex has mitochondrial disease; he also has been diagnosed with adrenal insufficiency, immune deficiency, dysautonomia, chronic intestinal pseudo-obstruction and pancreatitis.
Due to these serious conditions, Alex’s care is very complex and ongoing. He requires major interventions to remain stable and his medical status changes frequently.
Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week, we revisited 2016 Family Advocacy Day alum, Lizzie.
Lizzie is 7 years old and she loves ballet, singing and playing with her little sister and friends. Resilient and determined Lizzie lives with a number of congenital conditions, including the congenital heart defect, transposition of the great arteries, profound hearing loss and pulmonary stenosis. Lizzie had her first open heart surgery when she was only five-days-old and had cochlear implant surgery at age one.
Today, Le Bonheur Children’s Hospital’s Heart Institute takes good care of Lizzie and monitors her cardiac issues. She also sees a speech therapist regularly.
“Without Medicaid there would have been no way we ever could have afforded Lizzie’s surgeries,” states Lizzie’s father. “We still rely on Medicaid to help with Lizzie’s bi-weekly speech therapy and costly echocardiograms which she needs every six months. Medicaid is essential to Lizzie’s care and helps us provide for everything she needs to be successful.”
Speak Now for Kids is observing World Prematurity Day to raise awareness for this serous health crisis. Premature birth is the leading cause of death in children under the age of five worldwide. Babies born too early may have more health issues than babies born on time, and may face long-term health problems that affect the brain, the lungs, hearing or vision.
This week, we spoke with Jax’s mom, Kari, to learn more about Jax's journey as a premature baby at Children's Hospital of Wisconsin.
561 days. That’s how long Jax has spent at the hospital before going home. Every single day since he was born on Jan. 7, 2017 — nearly three months early. But he finally went home this past July thanks to Children’s Hospital of Wisconsin’s outstanding medical team.
Because of his extreme prematurity, Jax’s lungs weren’t developed enough to function when he was born — he was diagnosed with chronic lung disease, tracheomalacia and pulmonary hypertension. My son had six different surgeries during his 561-day stay and received care from many different specialties working together to help him grow, develop and get stronger.
Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Lily’s dad, Anthony, to learn how Medicaid helps military families like his.
While the family is covered under Tricare Standard, Lily’s care is supplemented by Medicaid which covers the Tricare deductible, copays, and other medical treatment and supplies that may not be covered by Tricare.
Lily was born without health issues. As a 15 month old, however, an ear infection spiraled out of control and resulted in “presumed viral encephalitis”—inflammation of the brain—leading to seizures and brain damage.
Lily’s parents manage her care needs by coordinating visits with approximately 20 specialists spread across their home state of New Jersey and neighboring Pennsylvania and Delaware. In addition, they face specialized daily concerns for her dental needs, medical equipment, education and transportation, among countless other life details.
“I changed careers because of Lily,” Anthony says. “I started in the Navy as an air traffic controller, then I became a nurse in the Navy Nurse Corps. Her care is so complex that I felt I needed medical training to help me better understand how to ensure Lily receives the necessary services, supplies and care. ”
Lily is covered by Tricare Standard, which is military health insurance, and she also receives Medicaid to supplement those things that Tricare does not cover. While Medicaid is instrumental in helping Lily gain access to needed medical services, the program presents barriers to coordinating her care—particularly when crossing state lines.