Patient Stories

Family of Pediatric Patient Gets Support When It Was Needed Most

Specialized Care Supports the Unique Needs of Pediatric Patients

Pregnancy is supposed to be a joyous, exciting time, thinking and dreaming about what the future will bring. That’s what Lisa and Rob DeRosier of Salem experienced in the spring of 2012 until an ultrasound at week 22 revealed that one of their twins might have a medical problem. After more testing, the baby was diagnosed with Trisomy 18, a genetic condition. The medical issues caused by Trisomy 18 are potentially life-threatening in the early months and years of life. Though less than 10 percent of children survive to their first birthdays, some children with Trisomy 18 can enjoy many years of life with their families.

“We hadn’t expected to go home with Ava and the idea of caring for her by ourselves was terrifying,” Lisa says. “Though her prognosis was still unclear, there was the possibility that she wouldn’t live long. We decided that we didn’t want her to have invasive surgeries, pain, or for her to be in the hospital for months on end. We want her to be comfortable and live the best quality of life, so we chose Care Dimensions (formerly Hospice of the North Shore & Greater Boston) to help us provide that care.”

Ava is now a happy, 10-lb., four-month-old who can track eye movements and rivals her sister in knowing how to get attention. She has central nervous system apnea that causes her brain to shut her heart off and stop her breathing. She also has trouble swallowing and is fed through a nasogastric tube inserted through her nose, but which will soon be replaced by a gastronomy tube inserted in her abdomen.

Coordinating Care

“We really needed a hospice team with pediatric experience who understands the needs of an infant, and we got that with our nurse Lisa Carey, RN, and Dr. Tamara Vesel,” explains Lisa. “Lisa taught us how to do infant CPR, how to monitor her temperature and many tips for feeding and daily care. It gives me greater confidence to be able to care for Ava at home, knowing that Lisa is a phone call away if I have any doubt about what to do or Ava’s medical condition. She even stopped by on Christmas to check on Ava.”

The day they brought Ava home, Care Dimensions social worker, Angela O’Keefe, LICSW, met with Rob’s older daughter Melanie, 13, to allow her to express her concerns and feelings about the possibility of losing her baby sister. She has also organized additional community services like early intervention and block nursing time, helped them apply for supplemental insurance and even found them other parents of Trisomy 18 children for peer support.

Rob says he was surprised about the scope of services available from Care Dimensions. “They worked with the hospital and equipment supplier over a weekend to get the right monitors, equipment and supplies so Ava could come home,” he explains. “This isn’t just about emotional support; they help manage the nuts and bolts of living at home with an individual who’s sick.”

Rob recalls one especially bright moment brought to the family by Dr. Vesel. “The first time she held her, she said, ‘This baby is perfect.’ That really meant a lot to us.”