Grace through grief

Leslie Mancera and Rafael Mancera said goodbye to their son Joel after three months. Joel was born with a genetic mitochondrial disease, a fatal diagnosis the family would receive within the first days of his life. They had very little time to prepare for the devastating news. Mrs. Mancera had a healthy pregnancy and delivery and had previously given birth to her older son, Damian.

Joel was born on February 14, 2018, which was also Valentine’s Day and Ash Wednesday that year. The family is Catholic, and they were planning to go to church that day to receive ashes when Mrs. Mancera went into labor.

“After Joel was born, everything seemed normal,” said Rafael Mancera. “I was going to head to the Sanctuary [at Lucile Packard Children’s Hospital Stanford] to receive ashes when the nurses told us that a chaplain could bring them to the room and administer them to the entire family.”

This is the first time they would meet Valeria Faraci, one of Packard Children’s clinically trained chaplains. Faraci provides support, education, ritual and consultation to the hospital’s families and staff.

“I arrived in Leslie’s room and met the family. I provided ashes, a blessing and a reading from the prophet Joel,” said Faraci.

The bible verse Faraci had read during her blessing resonated with the new parents. The parents named their son Joel in honor of the prophet. They would spend another six weeks in the NICU with Joel, getting lots of visits and check-ins from Faraci.

“She took her time with us. We would pray and enjoy some quiet time away from the busyness of the NICU,” remembered Mr. Mancera.

One of the memories that the family will cherish from the short time they had with their son is his baptism. Faraci and her colleagues from Spiritual Care and Social Work helped to arrange a Catholic baptism on the roof of the hospital’s West Building.

“She arranged to have a space for our family and Joel’s godparents to gather, [and she also] coordinated with our family priest, who flew in from Mexico to administer the sacrament to Joel who was only nine days old,” said Mrs. Mancera.

“This was incredibly important to our family. We wanted to be with our son and honor our faith. Valeria understood, and without hesitation she made this happen. Joel was our focus and just being with him. In moments, I would catch myself thinking about what we needed to do to make this happen, but as I would think about something, Valeria would already have it handled,” Mr. Mancera added.

Joel would live another 89 days after his baptism. Leslie and Rafael enjoyed their moments with him and provided comfort to their baby.

They chose to donate Joel’s tissue for research. They hope that other families and babies will benefit from future advances in blood tests and treatments for genetic mitochondrial disease.

Leslie was so moved by her experience at Packard Children’s that twice a week she brings water to the NICU for other moms who are using the pump room to provide breast milk for their babies.

“I remember how hard it was to be away from Joel, even for a short amount of time. I thought if women could have water in the same place they are pumping, then they could get back to their babies sooner,” explained Mrs. Mancera.

Leslie and Rafael continue to maintain their connection with Packard Children’s, a connection Faraci will always remember.

“They are an amazing family. They used their faith in such a beautiful way. It created a foundation for me to provide support and comfort,” said Faraci.