| Paris Trudeau-Sikes, Dr. Anna Penn and Liam Sikes
An unexplained lack of nutrients and oxygen had caused Liam distress in utero. Immediately after birth he needed cardiac resuscitation. His kidneys had shut down and he was struggling to get oxygen to his heart and brain. Liam’s right lung wouldn’t open, and he tested positive for sepsis, a severe systemic infection. At 12 hours old, when doctors were unable to stabilize Liam’s blood pressure, they had him transferred to Lucile Packard Children’s Hospital’s Neonatal Intensive Care Unit (NICU).
Not long after Liam’s arrival at Packard Children’s, Paris and her husband, Steve Sikes, had their first Care meeting with the attending neonatologist, Anna Penn, MD, PhD, and other members of Liam’s critical care team. “They told us that Liam was too small for dialysis,” Paris says. “He would need to repair his own kidneys or he wouldn’t survive.”
As the days went by, Paris and Steve buried themselves in books about premature babies and gathered as much knowledge as they could from doctors and nurses. “Paris and Steve were wonderful advocates for Liam,” says Penn. “From the moment they arrived, they were working with us to do everything we could for him.” And there was much to do.
After seven days of treatment on a gentle, oscillating ventilator, aggressive antibiotic treatment and other intensive care, Liam’s parents got the news they’d been hoping for: their baby’s kidney was on the mend and he was likely to survive. “We were doing a catheter rain-dance, just watching his little kidneys self-repair.” Two weeks later, on Christmas night, Paris and Steve were allowed to take their baby out of the incubator and hold him for the first time.
But this peaceful time turned out to be just the eye of the storm. After graduating to the intermediate nursery, Liam developed a serious hernia. His vitals began to destabilize, he became septic again and had to be moved back to neonatal intensive care. Paris had a hunch that Liam’s sepsis was related to his hernia, and asked his doctors to perform a surgery they felt was far too hazardous to risk. The next day Liam’s hernia became permanently stuck, forcing the decision for emergency surgery. Surgery revealed the source of the sepsis, a gangrenous appendix, and afterward Liam made a quick recovery.
At the same time, Packard Children’s ophthalmologists were monitoring Liam closely for a retinal disorder known as Retinopathy of Prematurity, or ROP, very common in preterm babies. Packard Children’s retinal specialist Darius Moshfeghi, MD, was all too aware of Liam’s especially high risk of blindness should his ROP reach stage 3, and anticipated that Liam would progress to the stage of needing surgery. While laser surgery for ROP prevents blindness, its residual effect is a permanent 20 percent loss in peripheral vision.
During the course of Liam’s care, Paris attended the weekly parent hour held in Packard Children’s NICU. The hour offered an opportunity to meet other parents in similar situations and also provided classes taught by NICU nurse practitioners. “The educational program was so instrumental in teaching me to know more and allowing me to ask questions in an open environment,” says Paris. “It was amazing how much they empowered the parents to be hands-on.” The NICU nurse presented a class to parents on ROP just a week before Liam was to reach ROP stage 2.
Leveraging their parental intuition alongside Moshfeghi’s expertise and seasoned concern for Liam’s high risk of blindness, Paris, Steve and Moshfeghi agreed that surgery would be done only if Liam reached stage 3 of ROP. Like the best medical decisions, it was a balance of what seemed right to both the patient’s parents and his doctors. Ultimately, Liam reached stage 2 and then, true to the nickname “Tiger” he had earned while fighting to save his kidney in the incubator, Liam faced down the danger until it receded.
“Working with Liam’s parents was a wonderful experience,” recalls Dr. Penn. “They would ask for the options, and then we’d work through to determine together what was best for Liam and for them.”
As Liam grows, his parents and doctors will be watching his development closely. But Dr. Penn is optimistic. “Research shows that the biggest factor that correlates with a good developmental outcome is maternal education and parental involvement,” says Penn. “We expect Liam to do very well.”