Merry Christmas, Little Angel

Julie Reyes, DNP, RN

Born with a cardiac anomaly, the family immediately noticed something was "wrong" with their child, but they did not know what. Thus began their journey to another country - our country - our state and our hospital - desperately seeking help.

During the course of the stay in the PICU, this baby boy coded 9 times, and each time we were relieved (if not surprised) to bring him back. Each time, the parents stood at the bedside as the crash cart was rushed to the room yet again, as chest compressions were initiated, as drugs were pushed into his IV. The parents were on the rollercoaster ride of their life. Watching the color on his face as much as the numbers on the monitor, each minute of their precious baby's life hanging in the balance. One minute he was being held in the arms of his mother and the next we were pumping on his chest to bring him back. Over and over again.

He endured cardiac surgeries, g-tube placement, interventions for intussusception, and eventually a trach placed when we were unable to extubate successfully. Every day, nurses would work with the parents to educate them on the care the child needed. They learned how to do G tube feedings, suction the trach, clean and change the trach and holders, how to work a ventilator, learned CPR, and learned how to care for a child with special needs.

The baby was delayed in physical and mental growth, yet we were still surprised at how well he was able to interact with his parents and the staff. At nine months of age, this baby had never had the opportunity to try to sit up. The nurses pooled their money together and purchased a walker for the baby. The move from the crib to a walker involved a nurse, a respiratory therapist, and at least one of the parents. We padded the baby in the seat so he would not fall over. The expression on his face was priceless - and the parents had tears of joy. It may not seem like much to many people, but this was an achieved "milestone" no one ever dared thought would happen. We took many pictures for the parents that day and surprised them with the photos framed as a gifted memory.

As days grew into months, this baby was ready to be discharged (if we could get extensive home health services). However, there was no place to discharge this baby to.

In this particular case, the family came from an area in another country where there is no electricity or running water, much less home health services. Additionally, since this family was not from America, they did not have Medicaid, or insurance, or money. They had no family to call on for help. They did not have citizenship. This case seemed as if we would send the child home to die should they go back to where they came from. We would not do that. This child needed a ventilator and a feeding pump. This child needed access to medical care at the drop of a hat.

Case managers, social workers, clergy, surgeons, cardiologists, pulmonologists, GI docs, therapists, and nurses were all working together to ensure the life, health, and safety of this child and family. Letters were written, federal agencies contacted, court appearances were made. Someone donated a small home, a surgeon brought them an AC/heater unit, the father was granted work privileges. Doctors and pediatricians donated follow up appointments for free for the child's checkups. A home health service offered a month of free care. The mother and father were trained and "specialists" in all aspects of the baby's care.

...and we sent them 'home', not sure if the baby would survive the month.

On Thanksgiving Day, the parents came to the hospital, to the PICU. To visit. To say thank you. In their stroller, they toted this beautiful baby boy and his vent. He started crying when he saw us. And we all laughed. He knew where he did NOT want to be! I knew at that moment that this baby boy had a chance. A chance at life.

December came around and we were talking about him in the breakroom at lunch. We knew this family did not have money for Christmas and would not be able to be with their family who they sorely missed. The situation seemed so sad to us, and we wanted to make Baby's First Christmas as special as possible. Our unit decided to "adopt" the family. We took up a collection, someone had an artificial Christmas tree to donate, others had extra decorations. People brought gifts - not only for the baby - but for the parents.

We asked the social worker to contact the parents to inform them we had some items for them, and set up a time for delivery. We went to their tiny home (cozy home), and with much laughter and festivities, we set up the Christmas tree while Baby Boy sat in his walker chewing on a teething ring. As the clergyman who went with us said a blessing over the parents, the baby, and the food we brought to eat, the joy and gratitude shone in the eyes of the humble parents.

And as for the baby who played happily in the walker - Merry Christmas Little Angel, Merry Christmas!

Merry Christmas, Little Angel

About Julie Reyes, DNP, RN

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