When Kristine Hartin’s son was born almost a year ago, she was not prepared for the emergency cesarean section and almost four-week stay in the Neonatal Intensive Care Unit at Texas Children’s Hospital The Woodlands.
Unbeknownst to the first-time mom, her son, Reid, had pituitary stalk interruption syndrome, a congenital abnormality that can cause jaundice, congenital abnormalities and low blood sugar levels. Reid’s diagnosis, in addition to his complicated delivery and low birthweight, prompted doctors at St. Luke’s Hospital in Houston where Kristine delivered, to transfer him to Texas Children’s Hospital The Woodlands, which is close to their Montgomery County home.
During his stay, Reid received expert pediatric care from physicians in a variety of specialties including pulmonology, nutrition and occupational therapy. Slowly but surely he began to gain weight and progress in other areas. At 4 weeks old, Reid’s doctors told his parents their infant was ready to head home.
“I was excited but I was also scared,” Kristine said. “All I could think about was how I was going to manage his care.”
“Transition from the NICU to home is a very exciting time for infants and families, but it can be an incredibly stressful time as well,” said Dr. Candice Allen, medical director of the High-Risk Neonatal Follow Up Clinic at Texas Children’s Hospital The Woodlands, also known as the SOAR Program. “Parents typically experience a significant amount of anxiety regarding how best to care for and nurture their newborn following discharge from the NICU.”
“Families have to shift their mindset from helping their infant survive to considering the myriad of supports and services that may be needed to help their infant thrive,” Allen said. “The vision of the SOAR Program is to help make this transition easier by providing infants and families with the support they need to help these precious little ones grow, learn, and develop to maximize their ultimate potential.”
The SOAR program is geared toward meeting the needs of families with high-risk-infants throughout the child’s first three years of life. The SOAR team consists of multiple medical and non-medical providers, including three pediatricians who have particular expertise in caring for high-risk infants following their discharge from the NICU. These pediatricians work closely with Allen, who is a developmental behavioral pediatrician, to track each infant’s growth and development to ensure that any developmental concerns are detected and addressed as early as possible. Should developmental concerns arise, our team of SOAR Occupational, Physical and Speech therapists are ready and able to provide any therapy services that are needed.
The SOAR team also includes several other providers that families might have met during their infant’s NICU stay, including a pulmonologist, clinical nutritionist, lactation specialist, and social worker, all of whom allow for continuity of care. There also is a psychologist on the team, who provides behavioral therapy and parent training to help address any social-emotional or behavioral concerns that an infant may develop.
In addition, parental stress/anxiety and depression screens are routinely given at follow up visits to make sure any necessary parental supports are in place and to facilitate access to community resources that may be necessary to meet any needs that are identified.
Kristine said Reid sees various members of the team about once a month. All of the visits are scheduled on one day for convenience and collaboration. So far, Kristine said, Reid is doing great. He’s gaining weight, hitting all of his developmental milestones and is happy.
“I don’t know how we would do it without our SOAR team,” she said. “They help so much and make us feel like we are a part of the medical team. We are extremely thankful for their support.”
Allen said she is glad to hear comments like Hartin’s, and that from her perspective, the SOAR program is doing a good job of providing a seamless transition of care for their enrolled high-risk infants, and their families, following discharge from the NICU. In addition, she said it is providing families with a more robust way of tracking their child’s development and that this facilitates early detection and intervention to help address, and hopefully overcome, these developmental concerns.
“Families in the NICU have gone through so much,” Allen said. “Our desire is to support you and your little one in any way we can. Our SOAR Team is ready to help your little one rise to new heights, spread his/her little wings, and SOAR!”