A Mother’s Cautionary Tale
Editor’s Note: For support navigating life after a type 1 death, please visit Jesse Was Here, a unique program of Beyond Type 1, providing resources to spouses, siblings, grandparents and friends in need.
On a cold Saturday in January, 2003, my 9-year old son, Jordan, slept over his friend’s house and they played basketball the next day with their team. On Monday, Jordan climbed the gym rope to the ceiling two times in a row. On Tuesday, I took him to his piano lesson and when we got home he asked me to play the new song he was given to learn. I played it very quickly and he laughed as I made mistakes. On Wednesday evening, I took him to a middle school chorus concert and he sat with one of his best friends enjoying the performance.
The following morning, Jordan vomited.
The norovirus was in full force. My husband had it two weeks prior, numerous children were absent from school and it was a news story for weeks on TV. On Saturday night, Jordan watched his beloved Boston Celtics on TV with his father and brother. Although Jordan stopped vomiting, he seemed very lethargic and we called the urgent care nurse with our concern.
She assured us that it seemed like he had the virus that was going around and to call in the morning if Jordan wasn’t improving. Sometime during the night Jordan died in his sleep. We immediately found out that he died from complications of diabetic ketoacidosis (DKA) pertaining to undiagnosed type 1 diabetes. We were stunned when we heard the diagnosis.
What did we miss? What were the warning signs of diabetes? We quickly educated ourselves about the warning signs and symptoms. The only sign I had heard of was thirst and ironically, we never saw Jordan thirsty since he was old enough to get his own drinks and never complained about being thirsty.
However, I saw signs and symptoms on various lists we found online that Jordan did have. He started bed-wetting about eight weeks before. Two of his friends were also bed-wetting and both had been seen by their pediatricians. Neither doctor mentioned that sometimes bedwetting is a sign of diabetes and so they didn’t test them. Both doctors attributed the bedwetting to developmental issues such as a growth spurt where the bladder doesn’t develop at the same rate and can cause the spilling of urine.
When Jordan started bed-wetting, I knew about the boys and their doctors’ “diagnosis.” Jordan had a three-inch growth spurt since the fall and so I attributed the bedwetting to that as well. He also looked thinner. Ironically, a friend who is an endocrinologist saw Jordan in December and commented about how much taller and thinner he was. She said he was losing his “baby fat.”
About two weeks before he died, I noticed a fruity odor on his breath when I was saying goodnight to him. I asked him if he had a juice box since he had just brushed his teeth and he said no. I didn’t think anything of it.
A few weeks before he told me that he felt “pressure” about school. I was so surprised to hear this because he was always a happy kid who had a lot of friends and he loved going to school. He wanted to be the first kid at the corner where the crossing guard stood in front of the school every morning. I went in to speak with his teacher who was also surprised to hear this since Jordan seemed very happy, well-liked and productive.
We decided to have a follow-up conversation in two weeks to assess the situation. A week before Jordan died, the bed-wetting stopped and he seemed so relieved. I went to see his teacher and we both agreed that Jordan seemed fine. Looking thinner, bed-wetting, a fruity odor on his breath, anxiousness about school didn’t raise any red flags for my husband and me. They seemed like very separate issues without a common thread.
We decided to create a fund in Jordan’s memory to raise awareness about the warning signs and symptoms of diabetes so that this wouldn’t happen to other families. We distributed a handout to all families in Jordan’s school and to all 22 school nurses in our community who would distribute the warning signs at their respective schools.
Within a few years, five children in our community were diagnosed as a result of our outreach efforts. I was invited by Dr. Lori Laffel, chief, pediatric, qdolescent, and young adult section, Joslin Diabetes Center in Boston, to present my story and warning signs awareness campaign to school nurses who were engaged in diabetes training at Joslin. The “multiplier effect” was working. More and more people were being made aware of the warning signs of diabetes and were telling Jordan’s story and more and more children were being diagnosed.
A 5-year old child in Chicago was diagnosed as the information spread further and further. A 10-year old child of a nurse was diagnosed after her neighbor gave her our warning signs handout. She had completely missed the warning signs and symptoms. To date, we have saved the lives of 24 children who we are aware of, many who were in DKA at the time of diagnosis. Some diagnoses were made by school nurses and some by parents. Fifteen years later I still speak with school nurses at Joslin a few times a year. I have the warning signs in five languages posted on the Joslin Diabetes Center’s website as a resource for school nurses.
When I was approached by Michelle Berman, a mother of a child with diabetes who is a driving force behind the Beyond Type 1 warning signs/DKA awareness campaign to become a parent advocate, I was excited to be a part of this national effort. Michelle and I met with the executive director of the Massachusetts Chapter of the American Academy of Pediatrics to endorse the campaign.
Over 1,800 pediatricians in Massachusetts were mailed toolkits with warning signs posters, materials for parents, an online portal with videos and other supporting resources. The campaign is so important to me because not only does it help to make parents aware of the warning signs of diabetes, but it reminds clinicians to think about diabetes especially when a child is sick.
DKA mimics a stomach flu or virus. I want to see phone triage protocols improved so that when a parent calls because their child is vomiting and/or has flu-like symptoms, the triage decision-making software or “tree” points to type 1 diabetes as a possible diagnosis. Clinicians need to ask the right questions especially during flu season.
Parents are most likely not going to bring their children in to see a doctor while they are vomiting so phone triage is critical. If a parent is calling a clinician about their sick child and they are not aware of the warning signs and symptoms, then the clinician needs to think about DKA.
“Beyond Type 1 refuses to accept that DKA is a common complication of T1D diagnosis. This is an awareness problem. And awareness problems have solutions,” said Thom Scher, Beyond Type 1 COO. “We’re proud to lead the charge to solve this problem in the USA, and eventually globally. We’re proud to represent the voices of this community. And we’re proud to put our energy behind such an important cause.”
I look forward to continuing my advocacy efforts with BT1. I do this work to honor my precious son’s life. If I can help to save the life of one child it is as if I am getting a second chance to save my son.
Read Previously Healthy—an interactive story with video interviews about a misdiagnosis in North Carolina.