No new mom ever imagines their infant will be diagnosed with two fatal liver diseases. That instead of making new mom friends that their closest confidants will be the surgeons, doctors and nurses that fight alongside you. That you will forever be part of a team to keep your child alive.

The first time our son Finn was in the NICU he was just shy of 2 months old. Days before he had been diagnosed with the liver disease Alpha One Antitrypsen Deficiency. An exploratory surgery was deemed necessary to positively rule out a second diagnosis, Biliary Atresia. A dual diagnosis would be so rare, that top hospitals in Boston and New York had never seen it. While we paced in the waiting room, his Doctor came to inform us that ‘medicine can be humbling’ and Finn is a rare, ‘struck by lightning twice’ case. It was confirmed, he had both BA and Alpha1. The surgeons would perform a Kasai operation to try and buy him some time with his native liver. Three months later it was decided Finn would not live much longer without a liver transplant. Waiting lists for organs can be long and indefinite. Selflessly Finn’s godmother Sarah stepped forward. She was proven to be a match and offered to be a living donor for Finn. She donated 16 percent of her liver to Finn. At the age of seven months and three weeks old, Finn received his life saving liver transplant. This time in the intensive care unit, he had now graduated from the neonatal floor, to the pediatric floor to begin his recovery.

For caregivers there is no day or night in the Pediatric Intensive Care Unit. Passages of time are marked by shift changes. Every 12 hours a new nurse is assigned to your child for one on one care. An instant relationship is forged. Your assigned nurse becomes your child’s lifeline, your instant confident. They are seeing you at your most vulnerable and your child at their most critical. You yearn for them to know your baby, the one who loves swimming and stories, whose giggles can crack the coldest of hearts, not the sedated restrained fragile patient under a mound of wires and breathing tubes. They introduce themselves by their first name and call you ‘mom.’ A steady little reminder of your vital role. You are about to go through something momentous together. A night (or a day) of keeping your baby alive. Although they hold the key of what interventions to make, they tell you you are your child’s expert.

They move like ninjas at night, with the skills of cat burglars. Making it their mission to not disturb their patient. Silently slinking between lines and wires and beeping machines to check vital signs. You sign and signal silently to each other conveying any new information. You work together packing ice bags around your baby to lower unexplained rising temperatures. They will be that squeaky wheel to the rest of the team, insistent on second and third looks. In an instant an alarm can go off signaling an emergency and the room will fill with nurses and doctors looking to stabilize your baby. As white noise fills your ears, your child’s nurse will be there being that voice, that advocate, that expert on your baby. They stay with you as the room clears. They continue to monitor, stabilize and prepare for what comes next.

In quiet moments you share stories like old friends. They bring you tea and encourage you to close your eyes for a few minutes. They respectfully accept you won’t be leaving the room until your child does.

We have been so fortunate to have outstanding nurses on #teamfinn. On April 18, 2018 Finn and his donor Sarah celebrated one year post liver transplant. To mark this momentous occasion we visited with members of Finn’s care team at New York-Presbyterian Morgan Stanley Children’s Hospital. Post transplant there are nurse practitioners who communicate with our family weekly, if not daily. Transplants are a form of treatment, not a cure and require continuous care. For our nurses in the PICU they continued to follow Finn’s journey on his Facebook page @finnthemightywarrior but had not seen him since he was last inpatient. We were able express our gratitude and humble appreciation. Together as a team we watched as Finn excitedly ran, his hair blowing in the wind. As his eyes sparkled ours filled with tears of joy celebrating this precious moment.

Kate Mullen, LMSW, RDT

Finn’s mom

To follow Finn’s journey join us on Facebook @finnthemightywarrior