Celebrating the ones that slipped away

Today is Children’s Hospital Boston’s Time to Remember Ceremony, where parents and hospital staff came together to celebrate those who have passed in the previous year. In honor of the occasion, Dr. Claire McCarthy wrote a touching piece about what the ceremony means to her and her husband. Here, Meaghan O’Keeffe, RN, BSN, CCRN, a registered nurse at Children’s, remembers Ava, one of the patients she lost.

Ava

Almost every nurse and physician who works at Children’s Hospital Boston has experienced a growing attachment to and love for a patient that they ultimately had to say good-bye to. In some cases that patient becomes part of who you are, both as a health care provider and a person. Ava is my patient that got away.

I feel very proud to be part of the Children’s team. I spend my work hours surrounded by brilliant minds, with every resource and medical advancement available at a moment’s notice. But despite these advantages, an unfortunate truth remains: medicine is not magic. Sometimes, no matter what you do, the patient slips away anyway. When that happens, it helps to remember that sometimes the most courageous medical act you can perform is allowing a very sick child to die peacefully with their loved ones at their side.

Ava at Thanksgiving

Ava came to the cardiac intensive care unit immediately after she was born because she needed surgical intervention to repair a defect in her heart. She was tiny and vulnerable and needed a ventilator to support her breathing. Her parents were terrified and overwhelmed. After several days of preparation she went to the operating room for open-heart surgery.

Ava’s short life was marked with cardiac arrest after cardiac arrest. To those who didn’t know her, I can see how it would be easy to assume that these episodes defined her life. But the team of nurses, doctors and respiratory therapists who cared for her around the clock saw something different in Ava. We learned to look past the ventilator, the ECMO circuit, the countless drains and IVs, and saw a beautiful baby girl. We dressed her and changed her blankets and arranged her little toys around her. We chatted and laughed with her parents and they quickly became our friends. We fought every battle and celebrated every victory alongside them because more than anything else we wanted to see Ava go home.

Ava with her parents Lynne and Ryan

But sometimes, no matter hard you wish, it just isn’t enough. I will never forget the moment when our team had to tell Ava’s parents that there was nothing more we could do for their daughter. It takes a lot for us to say that because it’s so hard for us to believe. But there are times when we have to accept the truth that is staring us in the face.

Two weeks after we spoke with her parents, Ava passed away. She was only 4 months old. When her time came, her mom and dad were there to help her. Their ability to let her go shined as the most loving parental gesture I had ever known. It touched me deeply and still affects me to this day.

To all the parents who have lost a child, whether at Children’s or anywhere in the world, I want you to know that we too will remember your children as those patients who slipped away. Their little feet make an imprint on our hearts, just like Ava branded mine, and in their memory we strive to give patients the best, because they, like you, deserve it.