On June 12, 2015, Melissa got up at 2 in the morning to check in on her daughter, Emily. Instead of seeing her baby sleeping as usual, Melissa was shocked to find Emily covered in vomit.
“It was the worst day of my life,” recalls Melissa. “Emily’s hands and lips were purple, and she was having a hard time breathing. I couldn’t believe what was happening.”
Melissa and her husband Tim immediately brought Emily to a local hospital in New Jersey, but they were having difficulty figuring out what was wrong. They originally thought that something was lodged in her throat and causing her breathing problems, but that wasn’t the case. The doctors drew blood for testing, took X-rays and gave Emily oxygen to keep her comfortable while they tried to identify the problem.
An emergency situation
The results of Emily’s blood tests revealed that her blood sugar levels were alarmingly high — she was in diabetic ketoacidosis (DKA). A life-threatening condition, DKA develops when a lack of insulin prevents cells from getting the glucose (sugar) they need. Emily’s doctors immediately contacted Children’s Hospital of Philadelphia (CHOP).
The EMTs arrived quickly, but things were taking a turn for the worse. “More than once, I heard the EMT say that she didn’t believe that Emily would make it,” recalls Melissa. “It was by far the worst thing that I have ever heard.”
The family arrived at CHOP’s Pediatric Intensive Care Unit (PICU) where a team of clinicians attempted to take more blood tests. Due to Emily’s complications, there were challenges with finding a vein to draw enough blood. “It was very overwhelming and emotional to see all of the IVs,” says Melissa.
Clinicians were able to stabilize Emily and successfully draw blood. They diagnosed her with type 1 diabetes, a chronic, meaning it never goes away, disease which causes the pancreas to produce little or no insulin, leading to high blood sugar levels. If left untreated, type 1 diabetes can cause severe damage to the body and can be fatal. Now that they finally had answers, it was time to come up with a plan to keep Emily healthy.
Adjusting to a new normal
CHOP’s Diabetes Center for Children is known for its industry-leading comprehensive team approach to managing diabetes. Their multidisciplinary team is comprised of specialists who help families navigate all of the different types of issues families may face when treating diabetes.
A certified diabetes educator (CDE), an expert diabetes coach, helped Emily’s family learn how to manage the day-to-day challenges that come with having diabetes. Emily’s parents were coached on how to prevent and address high and low blood sugars, make insulin dose adjustments, how to review blood sugar levels and manage ketones.
A registered dietitian discussed nutritional issues with Emily’s parents, and the team worked with them to create a regiment for counting carbohydrates during breastfeeding. An endocrinologist worked with the couple to develop Emily’s specific treatment plan, while a nurse practitioner coached Melissa and Tim on how to tailor diabetes management around the family’s lifestyle. A social worker and psychologist were available to assist the family with coping emotionally.
“It took a little while for everything to settle and to fully realize what was happening,” says Melissa. “It is overwhelming at first — people are using medical terms that you have never heard before or ever thought about. But we had a great team that was patient, kind and caring. They explained everything to us so that we could make the transition as easy as possible.”
That first year, Melissa and Tim brought in Emily on a near-weekly basis for follow-up evaluations. Now, Emily comes back every three to four months for routine screens. She is tested for early signs of other complications such as growth problems and high blood pressure, and her progress is monitored to keep her treatment plan on track. The family is also continuously trained on how to use technology, such as Dexcom, to more easily monitor Emily’s blood sugar levels through their mobile devices.
Melissa and Tim are also a part of a couple of parent support groups, and they find it helpful to hear how other parents deal with type 1 diabetes.
A two-way street
The relationship the family has established with CHOP has also brought them a great deal of comfort and reassurance as they’ve learned to manage Emily’s diabetes.
“CHOP has such a great communication method — everything is a two-way street,” Melissa says. “We listen to their advice, but they also really listen to us. They truly consider our thoughts and parenting decisions. When any changes are made to Emily’s treatment, our feelings are always valued.”
Today, Melissa and Tim feel at ease with the situation. They have confidence with managing Emily’s diabetes and are optimistic for the future.
“At first, I used to blame myself — I felt that I must have done something wrong as a parent for Emily to get type 1 diabetes,” she says. “But now I know that there’s nothing that I could have done to prevent it from happening. I know we can get through this.”
Melissa has advice for parents with children who are just diagnosed with type 1 diabetes. She says:
“It's easy to get frustrated. every child is different, and you may not get perfect numbers. some days, certain foods will help and the insulin will work just as planned. other days, it won't. but never beat yourself over it. just keep doing the best you can and trust your instincts as a parent. keep the focus on moving forward.”