A Mother's Intuition
Darla was a childbirth educator who was "always into medical research." In her work, she had heard about cord blood banking. So in 1996, when she was expecting a child and had seen a ViaCord brochure in her OB/GYN's office, she decided that it was something she was going to do for her baby so that "if we ever need it, it's there." Call it the first sign of mother's intuition, mixed with Darla's own philosophy that she needed to be her family's best healthcare advocate.
Acting on intuition
Fast-forward ten years to find Spencer, an all-American boy who "loves skateboarding, video games and fishing with his younger sister, Cierra." So in the fall of 2006, when Spencer seemed too tired to participate in some of his favorite activities, Darla knew something was wrong. His doctor felt as though he was just suffering from a run-of-the-mill virus. "But after a couple of weeks, he wasn't getting better," Darla recalls. In particular, she was concerned at how thirsty Spencer was. Family and friends told her this was normal for a growing boy, but Darla's nursing background taught her this could be a sign of diabetes.
Even though Spencer had seen his doctor earlier in the day, "my gut instinct said something wasn't right." So Darla brought Spencer to an urgent care facility that evening.
At Darla's suggestion, the urgent care doctor checked Spencer's blood sugar. It was 650, way over the normal 80-100 range for blood sugar. A test of his urine showed ketoacidosis - a serious condition where sugar spills out of the kidney and into the urine. Darla immediately knew how scary the situation was - ketoacidosis can lead to a diabetic coma or even death.
Spencer was immediately transferred to the closest children's hospital. While he was being treated, the family got an intensive education on diabetes care. "We met with the diabetes educator for ten hours straight and came home with a fat notebook about what we learned," says Darla.
A new life managing diabetes proves to be a full-time job
In addition to tackling a new diet and learning to count carbs, Spencer also had rigorous requirements to constantly check his blood sugar and receive insulin shots. "We started to give him six shots a day - a shot of insulin every time he ate." The new routine of managing diabetes was, as Darla put it, "a full-time job."
Even so, Darla spent hours researching treatments that could help Spencer. At first, she was researching insulin pumps, but "always in the back of my mind, I was thinking, 'we have his cord blood.'"
Darla's thorough research ultimately led to information about a new clinical trial where researchers were using a patient's own cord blood to treat type I diabetes. The study was being conducted at Shands HealthCare at the University of Florida, Gainesville.
She contacted the University of Florida and learned Spencer met the trial's requirements for participation. The study was particularly excited to have Spencer participate because, at age ten, he would be the oldest child enrolled in the trial. "The mean age of the other patients was something like four or five, so Spencer's age would give the research team their first look at how a patient would continue to respond to the effects of a cord blood reinfusion as the body changes and goes through puberty."
A thirty-minute reinfusion; a very happy boy
Although the time from Spencer's diagnosis to his involvement in the clinical trial was only two months, Darla felt like they had lived a lifetime. They had nursed Spencer back from acute illness, completely changed their lifestyle, gotten accustomed to giving Spencer 42 shots a week that were made up of two different types of insulin - and in the midst of it all, completed a planned move from Indiana to Virginia.
So when, just one week later, they had to bring Spencer to Florida for the clinical trial, everyone was tired, especially Spencer. It took only 30 minutes for him to receive the transfusion of more than 600 million stem cells from his cord blood. "I felt like we had hit the lottery!" explains Darla. As she watched her son skip down the hospital hallway after the transfusion, she couldn't help feeling "so thankful that we had banked his cord blood with ViaCord so many years ago."
A new beginning
Today, Spencer is twelve years old and one-and-a-half years into a two-year clinical trial that is using patients' own cord blood to treat type I diabetes. His insulin regimen, which was 42 shots a week prior to his treatment, has now been dramatically reduced.
Since Spencer is participating in a clinical trial, no one can be sure how his body will continue to respond to the cord blood treatment. The hope, explains Darla, is that the cord blood stem cells have "changed his molecular cell structure," forever altering the course of his diabetes.* While they can't know the future, Darla is thrilled by what they do know; "We've given Spencer a longer life expectancy by participating in the trial and we've made a difference to further medical research." On a personal note, Darla admits she's learned to appreciate the small things in life.
"I get such joy just seeing Spencer skateboarding, playing with his sister, and going fishing. Before the transfusion, he couldn't do these things. We feel so blessed that by storing his cord blood, we get to see Spencer be a kid again."
Watch Spencer's video to hear his story in his own words.
*The use of cord blood to treat type 1 diabetes is still experimental. Although the potential use of umbilical cord blood is expanding rapidly, the odds that a family without a defined risk will need to use their child's umbilical cord blood are low. There is no guarantee that the umbilical cord blood will be a match for a family member or will provide a cure. As with any transplant therapy, therapeutic success depends upon many factors beyond the stem cells themselves, including patient condition, type of disease, recipient-donor relationship and matching, and other factors.