In her own words

by Cheryl Toole, RN

A view from the other side of the ICU

A Children's nurse learns what it's like to put your newborn's life in the hands of others

I have been a nurse for the past 17 years, 11 of them taking care of critically ill children in the Neonatal Intensive Care Unit (NICU) here at Children's Hospital Boston. I love what I do and can't imagine doing anything else. It is the most challenging and rewarding work there is. Caring for babies and families who put their trust in us through the most critical situations is a humbling experience, adding instant perspective to everyday life.

In essence, we ask parents to believe in the expertise of people they've never met before. To trust what we think is best. Not long ago, my husband, Mike, and I found out what it means to be on the other side, to ask ourselves if we truly believed when our child's life was at stake.

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In April 2004, following an uncomplicated pregnancy and delivery at Brigham and Women's Hospital, our daughter and first child, Avery Wrinn Toole, made her grand arrival into our lives. We, along with our families, were elated to celebrate Avery's "birthday" and welcome her into the family. The joy of becoming parents was truly inexplicable, as I am sure it is for most parents.
As I mentioned, Avery's birth was without incident. She had a beautiful, ruddy pink complexion and a robust cry, letting us know early that she already had a few ideas of her own—no doubt the child of a nurse.

But the day after Avery's birth, the pediatrician noted a heart murmur during a routine exam. As a NICU nurse, I knew that most infants less than 24 hours old have murmurs, and was reassured, as was the pediatrician, that this was likely her patent ductus arteriosus (PDA) starting to close, thus causing "turbulence" of blood flow through the narrowing vessel. The PDA typically closes within the first two to three days of life as it is no longer required for fetal circulation.

Within the next two hours, however, Avery became increasingly pale and her respiratory rate went above 100 breaths per minute. The pediatrician examined her further and was concerned that the murmur was more than simply closure of the PDA. The Cardiology team at Children's was consulted, and following an echocardiogram, they realized that this "benign" murmur was actually a multitude of very complex, significant cardiac anomalies known as hypoplastic left heart syndrome (HLHS). It is very rare, and without major surgery, fatal.

Over the next hour, with a very calm, compassionate demeanor that was somehow comforting despite my terror and physically painful broken heart, the Children's cardiologist described in clear terminology the complex details of Avery's cardiac anatomy. He drew pictures and thoroughly explained what they meant. He answered the few questions we could mount given our state of shock, and went on to explain the plan for Avery's immediate transfer to Children's for open heart surgery. While he was speaking with us, I thought, "I cannot believe he is spending this much time with us. It is as if he has all the time in the world." But I knew better. He had many other patients, and a day full of other things to accomplish, yet he gave us his complete, undivided attention, and made Avery his absolute priority at that moment.

This was the first of many interactions with the staff in the Children's Cardiovascular program when we felt as though Avery was their only patient. In the worst circumstances, there was never any doubt that we were in the best hands.

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Avery was immediately transferred to the NICU where I work. Although she only spent a few hours there, a nurse from the Cardiac ICU (CICU) came up and reviewed with the NICU nurses the physiology and crucial assessment and treatment parameters for an HLHS patient. Ironically, this would have been my responsibility had I been working that day.

That evening, Avery was transferred to the CICU in preparation for her first open heart surgery. Her nurses spent hours with us reviewing her cardiac anatomy. They gave us diagrams of her heart and explained the multiple surgeries necessary to repair her HLHS. This intense but very clear and thorough teaching, complemented by updates from the cardiologists, helped tremendously to prepare us for her surgery. As a nurse, I can tell you that they struck perfectly the fine balance of giving us enough information so we could make informed decisions, but not so much that we were overwhelmed.

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The day of surgery arrived, and I finally realized that I was not going to wake from this horrible dream. Our precious baby girl, whom we had barely gotten to know, had HLHS, and her only chance of survival was open heart surgery.

Early that morning, we met for the first time with Avery's cardiac surgeon. He was soft-spoken, yet direct. Confident, yet he still conveyed a unique sense of humility, despite his tremendous talent and skill. He explained with an intense focus, and in a clear, concise manner, how he would perform this amazingly complex surgery.

My defining moment had arrived. I asked myself the questions that all families of babies I care for in the NICU ask themselves: Did I believe? Could I trust that my fragile, beautiful baby was in the best possible hands? Could I overcome the paralyzing fear I was feeling and give consent for what I knew was necessary, but didn't come with a guarantee of success?

In that instant, I realized I did believe. I knew that Avery's surgeon is one of the most skilled cardiac surgeons in the world. I knew that the team of cardiologists, nurses, anesthesiologists, respiratory therapists, perfusionists and many others are the best in their fields. I knew this because I had worked with so many of them, and knew what was possible.

As a nurse, it is instinctual to be the caregiver, so it was extraordinarily difficult to experience this crisis and accept being cared for. I had to learn to be a parent, which in itself was completely foreign to me—especially in an ICU when your child is surrounded by tubes and lines, and you need to ask permission to touch her and help to hold her. I can tell you that this experience has forever changed the nurse I am and the mother I'm learning to be.

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Avery recovered from her surgery and was discharged home two days before Mother's Day, the first of many that I am hopeful and grateful to be able to celebrate, thanks to the extraordinary care that she received at Children's. And although she has a long road ahead, we look forward with a new clarity to the possibilities that await her.

My first day back to work was difficult, as I'm sure it is for most parents. But knowing that I was returning to work that is so incredibly important was a great source of comfort. It was challenging to walk into the NICU and see babies who were hidden beneath all of the familiar high tech equipment, but I realized in that moment that these babies are someone's child first and our patients second. It was profound and rewarding—much like a day working at Children's.

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There are so many incredible staff who cared for Avery who we wish we could recognize individually, but for practical purposes we simply extend our heartfelt thanks to Dr. Pedro del Nido, Dr. David Fulton, Dr. James Lock, Patricia Hickey, Laura Bobotas, Juli-anne Evangelista, and all of the many nurses and staff who took care of Avery, and us, during her hospitalizations. Thank you all.