When a child is born, parents dream of bringing the baby home, introducing him to friends and family, and siblings bonding with one another. But, if things don’t go according to plan, those dreams can quickly change. Such is the case for Stanley and his family.

Stanley was born a twin with his sister at just 24 weeks gestation. When Stanley first arrived at La Rabida, he had several shunts in his brain to relieve pressure, a gastrostomy-jejunostomy tube (G-J tube), which is a feeding tube that was placed into his stomach and small intestine, a tracheostomy, a ventilator, and cerebral vision impairment, among other things. That’s a lot to handle for Mom and Dad, especially with three older siblings, his twin sister, and a newborn baby sister at home, too. But Stanley’s La Rabida care team was ready to support and guide his parents as they navigated a long and difficult road of learning how to care for Stanley’s complex medical needs.

During his early days at La Rabida, Stanley needed a lot of medications that made him very tired, meaning just waking him a challenge for his caregivers. When he was awake, he was easily agitated and difficult to calm, and while he was improving very slowly, he was in and out of La Rabida for additional brain surgery and shunt repairs/replacements. After his shunts were fixed, he came back to La Rabida like a new kid.

More recently, Stanley has been more active and engaged with his care team. He can stay awake for longer periods of time, his vision has improved, and he looks for and recognizes familiar people, and reaches out to grab and play with toys. Unfortunately, after a brief period of steady improvement our rehabilitation team noticed Stanley’s progress declining, and even seemed to have regressed to a worse state than he was before. The team recognized a malfunction in his shunt and, knowing how dangerous a malfunctioning shunt can be, went into action right away, getting him back to surgery to fix it.

Thanks to his La Rabida team, Stanley got the surgery he needed and returned on track and ready to regain his progress. Now he is now a happy, playful, and very vocal kid. He can sit in an adaptive chair and loves to sing with his caregivers. In fact, Stanley was even able to get out of his room for the first time in a long time for a special visit with his family in our new inpatient playroom. He had a ball with Mom, Dad, and his sisters, spending some much-needed quality time together OUT of his room, just like they would at home.

Now almost two years old, Stanley and his family are taking the next step to going home. He’ll continue to receive care at La Rabida in our Technology-Dependent Clinic.