Specialized teams serve as lifeline for parents of children with medically complex needs
Haven Greyson Smith, age 2, likes to break odds and set records. Born at just 25 weeks gestation, he earned the title of tiniest baby born at Lucile Packard Children’s Hospital Stanford in 2019, and was given the nickname Mighty Peanut. He weighed just 0.9 pounds at birth. Mom, Amanda, compared him to the size of a soda can. She likes to say that when he left the hospital’s neonatal intensive care unit (NICU) after eight months weighing just over 8 pounds he was “eight times the Haven he was when he was born.”
Doctors gave Haven a 10% chance of surviving, but survive he did. He recently celebrated his second birthday. Today, he weighs over 22 pounds. It has taken a special mom and an army of experts to bring Haven along this far—farther than many imagined.
“It hasn’t always been easy, but none of that matters. I have a thriving 2-year-old, which I didn’t always believe I’d have,” Amanda says.
After Haven’s release from the NICU in 2019, Amanda and her parents considered moving back home to Mississippi but they quickly realized Haven needed highly complex care at a level that only a few children’s hospitals in the nation could provide, including Lucile Packard Children’s Hospital Stanford, so they stayed. She credits specialized care teams for keeping Haven progressing and out of the hospital, except for a few stays.
Complex Care Clinic and CORE program provide multi-layer support
Before Haven left the hospital in 2019, Amanda was introduced to two specialized Packard Children’s programs designed to care for children with medical complexity and their families. With several challenging conditions—bronchopulmonary dysplasia (BPD), pulmonary hypertension (PH), kidney complications, a compromised gut, and developmental delays, Haven’s needs are definitely complex.
By enrolling in the Coordinating and Optimizing Resources Effectively (CORE) program, Amanda gained a multidisciplinary care coordination team (nurse, nurse case manager, social worker, care coordinator, appointment scheduler, and parent mentor) to help her navigate the complexities of the health care system and manage Haven’s care across multiple specialties.
“As a parent mentor, I provide Amanda with support and education, helping to strengthen Amanda’s knowledge, skills, and confidence to manage all parts of Haven’s care,” says Michele Anderson, Parent Mentor for CORE.
Put simply, the CORE team makes life more manageable for Haven and Amanda. They assure smooth hospital visits and coordinate Haven’s outpatient care by clustering appointments, troubleshooting insurance issues, assisting Amanda with care team communications, and providing emotional support in challenging times.
“We are the glue that binds everyone together. We provide multiple levels of support and connect specialty team members to best serve our patients,” says Misty Mallari, Haven’s nurse case manager with CORE.
Amanda chose David Bergman, MD in the Complex Care Clinic as her son’s pediatrician, realizing this clinic had critical expertise in providing primary care to children with special health care needs. Plus, the clinic works closely with CORE to ensure responsive, high quality care.
“Parents with medically complex children describe leaving the hospital like falling off a cliff. They go from having a big team caring for their baby around the clock to being alone at 2:00 a.m. We make sure that support is in place before they leave,” says Dr. Bergman, former Director of the Complex Care Clinic.
Amanda, a NATO Medal of Honor soldier who served in Afghanistan, likens leaving the hospital with a preemie to coming home from war and transitioning back into civilian life. It’s scary, emotional, and you feel a bit lost.
“You have a different perspective on motherhood with a young preemie because you’ve gone through the trauma of not knowing whether or not your child will survive,” Amanda says.
The Complex Care Clinic and CORE program go the distance to support Amanda and Haven. Recently, they teamed up to advocate for a home health nurse through Haven’s insurance provider, and then drafted an appeal when the service was suddenly cut.
“The Complex Care Clinic is on call for parents 24/7, with a goal of giving parents access to our services within 15 minutes of reaching out. Amanda knows I’m there for her for even the smallest question,” Dr. Bergman says.
Medically complex children in these programs see an average of six specialists and subspecialists. The complex care clinic pediatricians and the CORE program serve as the first call for parents when they need guidance on a concern, help coordinating care, or are feeling overwhelmed and simply need encouragement.
“I am a single mom, so I don’t turn down help,” Amanda says. “They feel like family because they know day in and day out what is going on with Haven. I can’t imagine caring for him without the resources CORE offers, and Dr. Bergman, who cares for the whole child.”
Haven lost a third of his intestines from a strangulated hernia shortly after birth that required two lifesaving surgeries before 6 months of age, and another more recently. He requires a gastrointestinal tube, or G-tube, that delivers formula to his gut to ensure he gets adequate calories and nutrients. Haven recently received a specialized G-tube known as a GJ tube to protect him from aspirating food into his lungs, which could potentially damage his lungs permanently—something the Aerodigestive and Airway Reconstruction Center team at Packard Children’s keeps a close eye on. Amanda gets specialized feeding equipment and formula from the hospital’s Children’s Home Pharmacy.
“I’m amazed by Haven’s resiliency and how after all he has been through he’s still able to take a big bite out of the world,” Dr. Bergman says.
Sub-specialty CRIB team supports Haven’s heart and lungs
Amanda receives support from a third specialized care team—the Cardiac and Respiratory Care for Infants with BPD (CRIB) Program. Breathing problems are common with micro-preemies and can continue after they leave the hospital. CRIB began monitoring Haven’s bronchopulmonary dysplasia (chronic lung disease) and pulmonary hypertension (high blood pressure in the lungs) as a newborn and continues to do so today.
Doctors at Packard Children’s created CRIB because of the constant need for communications between cardiology, pulmonology, and neonatology experts to care for preemies who have both lung and heart disease. The coordinated, multidisciplinary effort means convenient, seamless, and exceptional care for highly complex preemies in the hospital and through the years as they grow.
“What’s great about CRIB is that with pulmonary hypertension you need both a heart doctor and a lung doctor talking and agreeing on treatment, so you get that comprehensive look in one appointment,” Amanda says.
Lungs are the last organ to develop, so when babies are born prematurely their lungs are not fully formed. This can cause heart-lung problems, and leave kids fatigued and short of breath.
“Each lung has an array of blood vessels, shaped like a tree. When a baby is born early, this vascular tree is like a tree in winter. It’s missing all its little branches and the leaves in between,” says Rachel Hopper, MD, pediatric cardiologist and co-director of CRIB. “This puts pressure on the heart to pump more blood and can cause high blood pressure in the lungs.”
Haven’s pulmonary hypertension demands a specialized use of the drug treprostinil, a medication that is delivered 24/7 from a pump that he wears continuously to enhance blood flow in his lungs and make it easier for his heart to pump blood. Without this stress, his body is better able to grow and develop. Treprostinil tends only to be prescribed by large pediatric heart centers with a PH program, like Packard Children’s. Amanda credits the medicine for enabling Haven to come home.
“As we support Haven’s ability to grow new lung tissue and blood vessels, we are seeing his lungs improve,” says Michael Tracy, MD, pediatric pulmonologist and co-director of CRIB. “Research used to say that lungs became fully developed by age 2 or 3. Now, we are learning that lungs continue to develop even into adolescence.”
Stanford Medicine Children’s Health is part of the Pediatric Pulmonary Hypertension Network, a national group of pediatric pulmonary hypertension experts, and the BPD Collaborative, a national group of multidisciplinary teams dedicated to optimizing outcomes of infants and children with severe BPD. Participation in these organizations empowers doctors to identify trends and improve care. They hope research will eventually lead to novel treatments, like stem cell therapies that could potentially help repair damaged lungs.
“Haven is clearly a fighter, and he’s getting more fight in him as he gets older,” Dr. Tracy says.
To support his heart and lungs, Haven is hooked up to oxygen at night. A recent victory was weaning him off oxygen during the day, giving Haven one less cord to tether him.
“As a mother of a medically complex baby, you have to learn how to handle emergency situations but it sure helps to know I can reach out at any time to the CRIB team, CORE team, or the Complex Care Clinic,” Amanda says.
As Haven grows, so does his lung capacity, making it easier for oxygen to flow and creating less work for his heart. The hope is that he can eventually come off treprostinil and oxygen altogether.
“It’s rewarding to care for preemies like Haven. For many the first year can be dicey, especially with pulmonary hypertension,” Dr. Hopper says. “But we know that if we can get babies to two years of life, many will grow and thrive.”
Despite medical needs, Haven’s a busy toddler
Even with having to navigate tubes that deliver food, medicine, and oxygen, Haven’s still a typical toddler. He gets wound up and has giggling fits, enjoys throwing things, and he loves to snuggle on his mom’s lap.
“He runs, never walks,” Amanda says. “He’s constantly laughing and loving life.”
In his continual quest to break odds, Haven was just the third baby in the country to get COVID-19. He had high fevers, his arms and legs turned a purply pink due to low oxygen, and he lost one-fifth of his body weight. The big fear was respiratory failure, due to his lung disease, which never came to pass.
“Thanks to his mom’s excellent care and our skilled ability to support him quickly, he fared better than expected with COVID-19,” Dr. Tracy says.
Another record Haven just might set is being the toddler with the most Facebook friends. To date, he has 30,000. Amanda tracks Haven’s progress with a daily post to inspire other families with kids who were born prematurely.
“Someday, he’ll grow up and realize he touches so many lives,” Amanda says.
Amanda is excited for Haven’s future while staying grounded in today. She’s realistic in knowing that some of his health challenges will be life long, yet she looks forward to others going by the wayside as he grows.
“Every day my son is alive is a good day,” Amanda concludes. “He’s truly a walking Stanford miracle.”
