The love my daughter and I found in the PICU

The ventilator alarm woke me at 3 a.m. It was the fourth alarm in the past two hours. My 5-year-old daughter Molly had been there eight days, intubated and heavily sedated so she wouldn’t feel her skin blistering off her body, the terrible effect of a severe drug reaction.

I looked over and saw her nurse, Kelli, holding Molly’s hand with her right hand and trying to chart with her left. She smiled at me. “This is a girl who knows what she wants,” she said. “Each time I try to take my hand back, she bites on her tube and sets off the alarm. As soon as I hold her hand again, she stops and falls back asleep.”

I jumped out of bed, ready to take over. But Kelli stopped me. “Your job is to sleep,” she said. “My job is to take care of Molly. Right now, she needs me to hold her hand. So that’s what I’m going to do.” An hour later, I overheard the charge nurse ask Kelli why she had skipped her break. “I’m waiting for someone to be available to hold Molly’s hand,” she said. “Then I can go.” Ten minutes later, another nurse came in and held Molly’s hand until Molly finally slept.

I’ve spent much of my career in the pediatric intensive care unit, as a pediatric psychologist providing clinical care to children and their families. At first glance, the PICU is stark. Glass doors, bleak walls, minimal color. It is quiet until it is loud, with alarms signaling an emergency. Intensive care units are designed to care for the sickest patients in the hospital. They house the most advanced technologies, doing the work of the lungs and even the heart. Yet perhaps the most powerful interventions available in the ICU are compassion and love.

For me, the most powerful example of that love was the continuity of care model the staff put in place for Molly. For the sake of families and children, I hope to see that model expand dramatically in the future and become the standard of care for children who are anticipated to have a longer PICU stay.

The median length of stay in the PICU is about two days, so PICU care is often designed to support short stays. Physicians and subspecialists rotate in and out on a weekly basis. This works well for short stays, but for patients like my daughter, who spent 49 days in the PICU due to complications following her bone marrow transplant, the model increases stress and undermines care. I often pressured myself to ensure that each new team member not only had a complete understanding of my daughter’s complex medical history and updates on her care, but also knew who she was a person. When the nursing shift changed at 7 a.m. and 7 p.m., I made sure I was at bedside to meet the new nurse and tell her about Molly.

Early in her stay, I was asked daily to provide information on how she looked compared with the days prior, since I was the most consistent presence. This seemingly benign question put immense pressure on me. Sleep-deprived and extremely stressed about what was happening to my child, I began taking compulsive notes and pictures, worried that I would miss something that the constantly rotating staff needed to know.

About 10 days into Molly’s PICU stay, though, I began to notice more consistency in the nurses assigned to Molly. I later learned the PICU had started a “continuity list,” allowing nurses to “sign up” to be a more consistent part of Molly’s care team. This kind of continuity model of nursing, in which a small team of PICU nurses provide the majority of bedside care for a specific patient and participate in family/team meetings, offers significant benefits to long-stay patients and their families. Research links nursing continuity to better patient outcomes, decreased adverse events, improved communication, and stronger relationships with families. Parents highly value continuity of nursing care and underscore the importance of having a group of nurses who really know and understand their child.

I, too, saw enormous benefits to this model of nursing. Continuity allowed the nurses to quickly build their knowledge about Molly. Because fewer nurses who had never met Molly were involved in her care, their handoffs seemed more focused on the nuanced aspects of her care. I watched as they built a relationship with my daughter, and despite being sedated and intubated, she built one with them. Initially, giving a bolus of sedating medication was the only way to decrease Molly’s agitation when she felt the breathing tube in her throat. Yet over time, I watched her nurses calm her with only their words. “Molly, it’s OK,” they would say. “You have a tube in your throat that’s helping you breathe. You are safe; I am right here.”

The continuity model also meant that my husband and I were able to build deeper relationships with the nurses caring for our daughter. As my trust in the team continued to grow, I found that I no longer felt pressured to be the keeper of all information. Over time, I could let myself focus more on being Molly’s mom and even leave the unit occasionally to spend time outside or sleep for a few hours.

Continuity nursing in the PICU is not yet the norm, and I understand why. It presents personal and institutional challenges. It may require more emotional effort from nurses and can reduce staffing flexibility, which can increase costs. Shift rotation can become even more challenging and new difficulties can arise when a patient’s acuity changes unexpectedly.

But having felt the relief and support that came with this model of nursing, I strongly believe hospitals must explore and expand this option. We need to identify metrics that capture the holistic parent experience — things like if continuity nursing allows parents to take better care of themselves while their child is hospitalized and if it contributes to their emotional and physical well-being after discharge. We need to explore strategies to remove barriers to its implementation. Because love exists in the PICU, and continuous care staffing policies may make it easier for this love to surround those who so desperately need it.

A few nights before Molly died, I left the room for a few hours to try to get some sleep. When I returned, I saw a physician and two nurses leaning over Molly. My heart dropped and I started to panic. Then I realized they were giving Molly a manicure — bright red — and a blue pedicure with little white flowers. I’d mentioned the day before that Molly loved painted nails. They’d gathered supplies and called her physician over to take part.

The day Molly died, her twin sister, Emma, came to say goodbye. After the visit, the staff had more nail supplies ready to go. Emma spent that morning painting nails in the PICU. Nurses, doctors, respiratory therapists, administrators, and many others stopped by Emma’s nail painting station. They sat with her, asking her about herself and telling her stories about Molly in the hospital. They knew Molly. They loved her. And they shared that love with Emma. Today, when Emma talks about Molly’s death, she talks about sadness but also remembers Molly’s friends whose nails she painted that day.

This is the kind of loving care that creates a sort of beauty from heartbreak. All of us who care for children and their families should seek to nurture the kind of care that lets such moments flourish.

Acknowledgments: Our family is so incredibly grateful to the staff in the Medical-Surgical Intensive Care Unit at Boston Children’s Hospital and the policies they have in place that made the love we experienced possible. We hope this piece demonstrates the impact that a continuity model of care can make for patients and their families. This piece is dedicated to Molly’s nurses, physicians, respiratory therapists/ECMO specialists, and the other incredible staff members that showed Molly and our family so much love during the hardest months of our lives.

Sarah McCarthy is a Harvard-trained, board-certified pediatric psychologist and the director of the pediatric psychology consultation liaison service at Mayo Clinic. She is also the mother of twin 6-year-old girls, one of whom died from complications related to cancer treatment in 2022. McCarthy is a public voices fellow of AcademyHealth in partnership with The OpEd Project.