Girl Scout helps Beacon NICU parents who suffer loss

Amber Sahlhoff and Maggie Sullivan.

Maggie Sullivan has been a Girl Scout since kindergarten.

Many girls spend a year, two or three wearing the uniform and earning badges. Only 5 percent complete the highest and most prestigious achievement: the Gold Award. Maggie is among them.

Consider it the equivalent of boys becoming Eagle Scouts. It’s a really big deal for scouts like her.

“I’ve always felt that community service is important and Girl Scouts has been a perfect way to give back to my community,” Maggie said. “It has been one of the most long-lasting parts of my life.”

Maggie knew she wanted to do something special for her service project. These projects are supposed to benefit the community in a sustainable way, while allowing scouts the opportunity to support issues or organizations they care about.

“It took me a while to decide what I wanted to do,” said Maggie, who is 17 and a junior at Penn High School. She feels passionately about dance and STEM, or science, technology, engineering and mathematics.

But Maggie wanted to work on a project that would benefit the NICU at Beacon Children’s Hospital.

“I have a brother who was born prematurely, who spent 11 weeks in the NICU, so I wanted to give back,” she said.

She has watched her mom, Dana, donate her time over the years as a NICU graduate parent volunteer. And a hospital-related project also felt right since Maggie is thinking about studying biomedical engineering in college, and perhaps going to medical school. She attended the Mini-Medical University last June at Memorial Hospital and spends three hours a week volunteering at the hospital.

Maggie talked with Amber Sahlhoff, RN, and other NICU nurses about various project options, and she decided to help families who are not as lucky as hers. 

While their own “graduate family story” appears framed on one of the NICU walls, others leave the unit with empty arms. Instead of taking their babies home to the nurseries and cribs awaiting them, these families are planning memorial services and funerals.

The NICU nurses did not have a formal step-by-step guide explaining what they can do for a family after a loss, and their supplies were not organized.

“The need for a bereavement cart was simply because of how busy and vitally important this unit is,” she said. “Their top priority is to care for the infants, so the nurses don’t have much time for organizing supplies.”

Amber, along with NICU graduate parent Mary Martin, purchased a cabinet that local artist Missy Cadotte painted for free. Missy also donated another set of drawers for the NICU to use for bereavement supplies.

“I took the cabinet and drawers and organized them,” Maggie said. “I went through the paperwork, sorted out clothes, and organized miscellaneous supplies. Then I took the information that the nurses use in the event of a death and turned it into a binder and slideshow presentation for them.”

Pictures were taken of all the supplies, and with Amber’s instruction and guidance, Maggie created a PowerPoint for nurses to watch so they’re familiar with what they can do for families after a baby’s death. Mary also assisted in deciding what literature should be compiled and offered to parents.

“We’ll take these slides and have them printed into a booklet so nurses have step-by-step instructions of everything we do for families after a loss,” Amber said.

Parents also receive packets of grief information and services that were compiled by Lauren Rose, MSN, RNC, OB bereavement coordinator, who lost her son, Eli, at just over 38 weeks. “Unfortunately knowing grief firsthand, she really has helped taylor the program,” Amber said.

Lauren said her loss in September 2015 helped her gain a better understanding of what families might need, and she created resource folders for grieving families, in honor of Eli, that are now offered to both parents who suffer the loss of a child, and families who suffer the loss of a loved anywhere in the hospital.

“Maggie has been a huge help in organizing the important keepsakes that are given to families to help honor the life or lives of their baby or babies,” Lauren said. “We all appreciate how much she has helped our staff.”

Her time and efforts, in fact, are invaluable to grieving families. 

“The reason this is so important to families is because the items that are given to them are the lasting tangible things they have left of their baby or babies,” Mary said. “No one ever thinks about babies passing away until it happens to you or someone you know. Being a mom of two angel boys, my memory boxes and pictures mean the world to me. Being a parent bereavement volunteer is therapeutic for me and makes me feel like I am keeping my angels, Roger and Guy’s legacy going.”

Maggie Sullivan and her little brother, Joe Sullivan.

Families spend as much time with the baby as they want, bathing, dressing, holding, and being involved in the professional pictures offered, if they choose. After they have said their good-bye, Amber said the nurses do hand and foot prints, cut a wisp of hair, and do 3D hand and foot molds that are placed in a memory box for the family to keep.

Kandis Tubb, who founded Threads of Love-Isaiah’s Chapter in honor of her son, gathers donations for and creates the memory boxes. Kandis paints and fills the boxes with such items as a blanket, hat, cards for nurses to fill out for foot prints and measurements. Like Mary, her work helps her keep the memory of her angel boys, Isaiah and Herbie, going. Kandis now has a happy healthy rainbow baby girl.

“It’s so wonderful that others are finding ways to help support bereaved families,” Kandis said. “In the midst of all the emotions that follow the death of your child, I know I felt like I needed someone to tell me what to do next. Having these materials readily available will be so beneficial to both families and staff.” 

The families also receive paperwork regarding grief, funeral options, donating to a milk bank, and more.

“I didn’t know about any of this until I started organizing the cart and discussing with Amber. I found it very humbling to help out families in such a deep loss,” Maggie Sullivan said.

“Organizing the tiny clothes and hearing stories of families who lost their infants made me really appreciate how lucky my family is to have a happy, healthy boy,” the Girl Scout said. “Our time in the NICU with Joe was hard, but we are so fortunate that we got to take him home while some families don’t get the same joy.”

Maggie has been moved by what she has learned.

“I hope the project, and making the process more efficient, helps the staff at the hospital and parents in the unit who suffer a loss. And now, I have a greater respect for the fragility of life and how grateful we should be. I really appreciate the nurses and realize how well my brother is doing.”