Mary Grace is not your typical Homecoming Queen. Born with Down syndrome, she takes special life skills classes at her high school, where she has found advocates among her classmates. Her zest for life is infectious. She loves to dance, listen to music, ride horses and swim. This active teenager lives a full and busy life, all while managing Type 1 diabetes.
Mary Grace’s health has been closely monitored by doctors for her entire life — they help her to manage the potential complications of Down syndrome. At 2 years old, a regular blood test by her pediatrician revealed that Mary Grace had an underactive thyroid, which impacts the body’s heartbeat, temperature, weight and growth rate.
Mary Grace was referred to Children’s Hospital of Philadelphia (CHOP), where Craig Alter, MD, a Pediatric Endocrinologist and Clinical Director of the Division of Endocrinology and Diabetes took on her treatment. This would be the beginning of her life-long relationship with Children’s Hospital.
Mary Grace was on a family trip to the beach when she was 4 years old and was experiencing strange symptoms. She was tired, frequently getting thirsty, and wetting herself. Her mood was fussy, and she was crying a lot. Susan, Mary Grace’s mother, called Dr. Alter.
“I think he could hear the concern in my voice,” recalls Susan. “He asked some questions about how she was acting. When I described how lethargic she was, he told me to put her in the car and take her to the nearest emergency room. He was very calm, but it was a no-nonsense command.”
About Type 1 Diabetes
A quick test at the local emergency room showed that Mary Grace’s blood sugar level was dangerously high. She was taken immediately by ambulance to CHOP. Dr. Alter confirmed a diagnosis of Type 1 diabetes, a chronic (meaning it never goes away), autoimmune disease that causes the pancreas to produce little or no insulin. If left untreated, diabetes can cause severe damage to the body and may even be fatal.
Mary Grace spent the next three days at CHOP getting her blood sugar level stabilized in a healthy range, while Susan learned how to care for a child with diabetes.
CHOP’s Diabetes Center for Children is known for using a comprehensive team approach to managing diabetes, and their experts help families navigate all of the different kinds of issues they may face when treating diabetes.
The medical team showed Susan how to test for blood sugar several times a day and use the results to give Mary Grace appropriate doses of insulin or amounts of juice or fruit. A registered dietitian discussed nutritional planning with Susan, and a social worker and psychologist were there to help the family cope.
A key member of that medical team was Joanne Moser MSN, CRNP, a Pediatric Nurse Practitioner. Joanne would become Susan’s most important coach in the years to come and helped her tailor Mary Grace’s diabetes management around the family’s specific needs and lifestyle.
“I was afraid at first,” Susan remembers. “I felt very vulnerable, like I was failing. Joanne picked up on that. She was very supportive and kind, but also objective and clear. She would say, ‘This is what we have to do to maintain Mary Grace’s health.’ When I had questions or was struggling, she found resources to help me out.”
As the years went on, the available tools for managing diabetes improved, which helped with treating Mary Grace. At first, Susan did finger prick tests six times a day and gave injections of insulin with a syringe as needed. When Mary Grace was 9, she changed to an insulin pump, which made things much easier. The insulin dose was administered in a gradual drip, and the entry point only needed to be changed every two days. Then, Mary Grace was given a continuous glucose monitor with a transmitter, which reduced the finger prick tests to two a day.
At home, Susan monitors the glucose data. She gives Mary Grace fruit snacks or a juice box when the readings fall below the target range, and gives an extra dose of insulin through the pump if the readings are high. At school, nurses monitor the data and know how to respond to high and low readings.
Joanne also taught Susan how to look at trends and patterns in the glucose levels to fine-tune the nutrition and insulin responses. Emotional stress or illness can change the levels, and Susan has come to understand how to anticipate those changes to keep levels in the target range.
Coordinated care and support
Because diabetes is just one of Mary Grace’s medical issues, Susan appreciates the integrated care CHOP provides. In addition to the endocrinology team, Mary Grace sees specialists in ophthalmology, gastroenterology and nutrition. The specialists in each of these areas are aware of the treatments being provided to Mary Grace by their colleagues.
“I appreciate how connected the different medical teams are at chop, and how they tailor the treatment approach to our needs. they support mary grace and her desire to be independent. i feel a partnership with chop. i don't feel alone in this.”
Mary Grace doesn’t feel alone either. Her classmates at school make a genuine effort to connect with her. Through the Best Buddies program, students volunteer to be paired with special needs kids and include them in interesting activities. Mary Grace learned French from one of her buddies, and joins in bowling, prom and the high school fashion show with all of her classmates. The caring inclusion by her classmates was demonstrated in a delightful way when they chose Mary Grace as Homecoming Queen. That’s an honor she’ll never forget.