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Each year, approximately 30,000 Americans are diagnosed with Type 1 diabetes. More than 13,000 are children—35 children are diagnosed each day.

Megan

Now seven years old, Megan was only 16 months of age when she had her first ambulance ride to Children's Hospital in Pittsburgh from her local community hospital.

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Megan Wolk

Before that ride, Megan had developed flu-like symptoms and pink eye, but she was not responding to treatment. Angela, Megan's mother, also noticed that Megan seemed to be having episodes of "stares" and listlessness, becoming lethargic and refusing to eat. Her pediatrician instructed Angela to take Megan to the local emergency room.

A simple blood test showed Megan's blood glucose level to be extremely high—high enough to be fatal. At Children's Hospital, Megan was diagnosed with Type 1 Diabetes Mellitus. As more and more medical terms were being used in the hospital, it sounded to Angela like a foreign language was being spoken, a language she couldn't comprehend.

In the weeks following Megan's diagnosis, Angela and her husband shed many tears, having to continually prick their baby to check Megan's blood sugar, having to prompt Megan to eat, having to deny Megan foods she had come to enjoy. There were also many sleepless nights, with worries that something would happen while Megan slept, and worries about how to keep Megan healthy when she was awake. Living in a rural area, frequent 140-mile round-trips to Pittsburgh became routine. Angela was on "auto pilot" in those first years.

Unfortunately, when Megan was three years old her father became terminally ill. The family was just beginning to adjust to a life of needles and glucometer checks, insulin and notebooks, documenting meter readings and meal planning. A new baby brother was part of the picture now as well. With all the stress in the home, Megan's diabetes became very brittle and she required frequent emergency room visits and hospitalizations. Just a few months past her fifth birthday, Megan's father died.

A few months later, Megan began kindergarten. The transition to kindergarten is difficult for many children; Megan had to take this big step with the added burden of her diabetes—both the disease and its care—and with the intense grief over the loss of her father. Angela felt like a "bad parent", having to pull her clinging child from her to force her on the school bus day after day. Megan feared leaving her Mom to be at school with strangers, and she cried, afraid, wondering, "Will Mom be here at the end of the day?"

In addition to Megan's diabetes and grief, Angela had a three-year-old son at home to care for, and was dealing with her own heartache after losing her soul mate. Angela had so much sorrow and sadness that it was a chore to get through each day.

In the spring of Megan's kindergarten year Pam Poole, a Care Coordinator with the Caring Program, contacted Angela. Feeling helpless and hopeless, Angela was skeptical at first about receiving any real help. Pam spent a lot of time at first simply listening to and validating Angela's and Megan's concerns and their grief. She offered emotional support and began to educate the family on resources for grief and on Megan's educational rights as a child with diabetes.

Before Megan began first grade, Pam helped Angela design and develop a "needs list" for the school to insure Megan's safety in the classroom. Pam guided Angela to facilitate effective communication with the Pediatric Endocrinologist. She also accompanied Angela to an IEP/504 (educational/medical plan) school meeting and advocated for implementation of the 504 Diabetic health plan. The plan included obtaining an aide for Megan in the classroom to test her blood glucose and make sure she had the adequate snacks to maintain her blood glucose levels.

The school principal shared with Pam and Angela that the rural school personnel lacked sufficient knowledge and/or experience related to the care of a child with diabetes in school. Pam arranged for the Pennsylvania State Diabetic Nurse Consultant to come to the school and hold an in-service presentation about children with diabetes in the school for the teachers, the principal, the aide and other adult personnel.

As Megan approached second grade, Angela was more empowered to speak for her daughter's continued needs, including the possibility of an insulin injection at school as her diabetes remained brittle. The school principal felt uncomfortable with this request as the rural school district has only one Nurse for five elementary schools. Pam worked with the local community hospital in procuring a Diabetic Nurse Educator to go to the school to instruct the principal and other adults on giving injections, while also reviewing diabetic education.

Pam referred and encouraged the family to attend the Highmark Caring Place, the Caring Program's sister program within the Highmark Caring Foundation. Angela, with Megan and her younger brother, John, enrolled in the Caring Place to help the whole family cope with their grief of losing their father and husband. The experience offered them comfort and friendship with others in a similar situation. Megan seems to be coping better now; the family has some good days as well as many sad moments, but there is a sense that they are able to go on with life.

"Pam gave us hope," Angela said. "And she helped me to find my voice to advocate for Megan. I know that Megan's diabetes is a life-long battle to maintain her health and well-being. But I'm relieved to have Pam in our lives to help us through the rough times and thankful for her ongoing support."