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Connecticut Children’s stands with families, even after their child passes away.

James and Adrienne Panning are among a community of families who have heard the life-altering words, ‘Your child is not going to make it.’

Olive Panning was born on October 18, 2016. While her parents, Adrienne and James, knew she would be born with a heart defect, nothing could have prepared them for the myriad other ailments Olive faced. Immediately after birth, she dealt with an array of cardiac and respiratory issues, including pulmonary hypertension, which made it hard for blood to get though her lungs and oxygenized to distribute to her body. She also suffered from a pulmonary sling, where her left pulmonary artery had split off and looped around her esophagus causing pressure to the area and severe respiratory distress. Trying to get to the root cause of these issues, Olive and her parents underwent genetic testing which revealed she has a rare chromosomal abnormality known as Unbalanced Translocation, a major contributor to neurodevelopmental disorders. Olive had an extra part of Chromosome 4 and was missing part of Chromosome 18.

Olive Panning Smiling

Olive Was a Fighter

After five weeks in the Neonatal and Pediatric Intensive Care Units, Olive went home just in time for Thanksgiving, but in December, she began having “blue spells” or cyanosis, where her face, lips and body would turn blue, then she would lose consciousness as a result of inadequate oxygen circulation. Adrienne and James agreed it was time for heart surgery to fix this issue. Olive was just three months old.

In the years following her first heart surgery, Olive was hospitalized multiple times, went through a second cardiac surgery when she was almost two, and had a pacemaker placed a few days later. When she was two, Olive had exploratory neurosurgery, where doctors discovered she had a tethered spinal cord, which her surgeons were able to free, so she could have an easier time walking. Olive was both legally blind and deaf. She was cared for by multiple specialties at Connecticut Children’s, including Gastroenterology, Orthopedics and Speech Therapy. Despite all the medical hurdles life threw at Olive, they never phased her. “Olive was a child who didn't know her limitations, so she never let them stop her!” said Adrienne.

“She was one determined little girl who surprised everyone with what she could do. And the happiness she could find in anything still amazes me.” -Adrienne Panning

After more than three years of medical hardship, Olive passed away on January 10, 2020. James and Adrienne were overcome with grief, and Connecticut Children’s immediately surrounded them with Bereavement Support services. Adrienne recalls, “That morning the team did handprints with us on a canvas that I love having today,” said Adrienne. “We also did the fingerprint pendant necklace. We received two memory boxes, a goodbye book for Olive's little sister, a LEGO Duplo set, a lavender infused stuffed dragon, a breakfast food cart and a new dress to put Olive in. [The staff] sat with us for hours in the PICU, helped manage the long line of friends who wanted to say goodbye. The whole morning was wonderful considering why we were there. The team was amazing to work with, explained the process of the day, made everything seamless and effortless for us.”

Handprint

Based on their family’s experience at Connecticut Children’s, Adrienne now serves on Connecticut Children’s main Family Advisory Council and a second one specifically for Palliative Care.

“I love helping others by sharing our experiences with Olive and try to relate it to their lives.”

Supporting Families Throughout the Grieving Process

Bereavement Support services provide resources to grieving families, which may include a necklace with a thumb print of their child, a recording of the child's heartbeat that goes into a teddy bear, plaster casts of feet and hand prints, counseling services and burial assistance. The services are facilitated by a multidisciplinary group of physicians, nurses and family support staff who volunteer to serve bereaved families. Beyond the individualized services offered, Connecticut Children’s hosts an annual ceremony that brings together families whose children have passed at Connecticut Children’s. This event provides families an opportunity to speak about their loved one, honor their memory, grieve and be vulnerable around others who have experienced the loss of a child. Adrienne says, “One of the things I have enjoyed a lot in the three years afterwards is the bereavement ceremony held at Wickham Park. It’s wonderful to hear the stories of other families and how they're all doing.”

At the 2023 ceremony, all of the families who lost a child were given a jar of colored sand to represent the child they had lost. Each family then poured their sand into a larger container to make sand art, which was shaken and distributed in small bottles to all of the families and attendees. Each bottle represents all of the families and their beloved children and serves as a reminder that no one is alone in their grief.

Michelle Cutrali, a longtime supporter and philanthropic volunteer at Connecticut Children’s and agent with New York Life, was moved by this activity. “To us, this is a bottle of colored sand, but what it represents is one of the most significant, unifying events that we helped to support,” she said.

The New York Life Community Impact Grant

In honor of Michele’s philanthropic commitment and leadership as a volunteer with Connecticut Children’s, New York Life recently awarded Connecticut Children’s a $25,000 Community Impact Grant, which will be used to fund Bereavement Support services like these. New York Life’s commitment to helping families through the grieving process aligns with Connecticut Children’s mission to provide family-centered care and stand with families, during their child’s treatment and beyond.

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