Any new or experienced parent can attest to the fact that the early months of even the healthiest child’s life comes with its own set of challenges. Lack of sleep, figuring out feedings, tracking developmental milestones – the list goes on.
But for families of children with serious health issues, those first few months – and even years – can make them feel especially vulnerable as they learn to juggle their child’s complex medical needs and uncertainties about their future. It’s a balancing act that Justin and Michelle know very well, and one that the Safe at Home program at Children’s Health℠ strives to make easier for families.
Expert cardiac care from birth
When Michelle was just 20 weeks pregnant, her unborn son, Jack, was diagnosed with hypoplastic left heart syndrome (HLHS), a congenital heart defect that prevents the heart from pumping enough oxygen-rich blood to the rest of his body. Though the family lived in Austin, their local pediatric cardiologist recommended they travel to Children’s Medical Center Dallas for the surgeries and care Jack would need at birth.
Jack was born on Aug. 5, and was immediately admitted to the CVICU. He had his first heart surgery at just 1 week old and spent the first six weeks of his life in the hospital before being released stayed in a nearby apartment a few blocks away. He and his family stayed there while they waited and prepared for his second surgery, which happened a few months later.
Just before Jack turned 6 months old, Justin, Michelle, Jack and big sister, Rêve, were able to return home to Austin. Michelle says that even though they had studied, practiced and worked hard to perfect the skills they’d need to care for Jack, the first few days at home were a huge reality check.
“We were overjoyed to be home with our boy,” she says. “But suddenly, we didn’t have our team of nurses right there with us and we began to wonder if we could really do this.”
Fortunately, the family wasn’t on their own.
By your side, with support at home
Children with congenital heart defects may require multiple major surgeries within their first few years of life. The Safe at Home program provides these families with the support, resources and tools they need to care for their child in between surgeries so they don’t need to remain in the hospital. A dedicated team of nurse practitioners are available around the clock to answer questions that may arise, monitor patient vitals and help ensure there is seamless communication between the Children’s Health care team and the patient’s pediatrician. It’s a lifeline that Michelle can’t imagine going without.
“I don’t even want to think about what we would do without their help,” she says. “There is so much to learn when taking care of a baby like Jack and all the information can be overwhelming. The Safe at Home team gives me peace of mind in everyday situations and has helped us understand what to expect along the way.”
Jack will most likely undergo his third major surgery between his third and fifth birthday. And Michelle can rest assured, the Children’s Health Safe at Home team will be just a phone call away.
The nationally renowned team of pediatric cardiologists and subspecialists at Children’s Health treat the whole spectrum of pediatric heart problems, with a commitment to excellence. Learn more about our treatments and services.
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