A Promise of Chinese Food; A Promise of Hope
Talya was a "late in life baby." Barry and Rita Miskin had tried to conceive after the birth of their third daughter, but after some time, they had pretty much given up hope. But, six years later, they were expecting, and were "surprised, thrilled and delighted," Barry recalls.
Routine prenatal testing indicated a healthy pregnancy for Rita. And in January, 2002, the Miskins welcomed their fourth beautiful daughter, Talya, to the family. They didn't realize how fortunate they were to have delivered Talya at Jupiter Medical Center, where obstetricians routinely ask parents if they want to store their baby's cord blood. Although Barry, a prominent surgeon at Jupiter Medical Center, and Rita, an oncology nurse, were both part of the medical community, they didn't know much about cord blood banking. As Barry puts it, "we didn't necessarily understand it, but we did it anyway. And I really didn't think anything of it."
The diagnosis
Having a baby in the home again was joyful. But within Talya's first few months, Barry and Rita felt as though she wasn't hitting some of her early milestones as expected. And while they had initially shrugged off a slight twitching of her arms as a common infant reflex, eventually "we videotaped it and showed it to our doctor." The doctor suspected that the mild twitching was the result of small seizures Talya was having throughout the day. A pediatric neurologist confirmed via MRI that Talya had suffered an intra-uterine cerebral bleed, "in other words, a stroke while still in the womb," Barry explains. The diagnosis: mild cerebral palsy.
Achievement takes on a whole new meaning: living with a neurological condition
According to Barry, this was when he and Rita "joined a different club, where we put aside some unrealistic expectations for Talya and focused on each achievement as it came." As a result of her stroke, Talya suffered from paralysis on her right side, and while achievements did come, they were more delayed than for most babies. "When she sat up by herself, we were astonished. When she crawled, we couldn't believe it. When she stood, we were amazed. It was all the stuff we took for granted with our other girls that, when Talya did it, we were just blown away. But that's Talya — she's really persistent and really stubborn."
While Barry and Rita controlled Talya's seizures with medication, they also searched for hope. Rita combed the Internet while Barry researched stem cell therapies. He began to recognize that there might be a link between Talya's umbilical cord blood, which they had stored almost as an afterthought, and their search for a treatment.
A fateful lecture: Barry connects with ViaCord and Duke Medicine
During this time, Jupiter Medical Center invited Morey Kraus, Chief Technology Officer for ViaCord, to speak to its obstetricians about the promise of cord blood banking. "I was the only non-obstetrician in the room, and the other doctors kept teasing me that I was only there for the free food," recalls Barry. "But when Morey spoke about the promise of cord blood stem cells, I felt like he was preaching to the choir." After the lecture, Barry spoke to Morey about Talya, now 5 years old. Morey put him in touch with Dr. Joanne Kurtzberg, a pediatric doctor specializing in blood and marrow transplantation at Duke Medicine.
Barry spoke with Dr. Kurtzberg and her team by telephone on several occasions, and Dr. Kurtzberg ultimately recommended that Barry and Rita bring Talya to Duke Medical Center for a re-infusion of her own cord blood stem cells. Although it would be months before the procedure could take place, nothing could dampen the Miskins' excitement. "I felt like a crazy, nutty parent who would have given anything for this opportunity," recalls Barry.
A worthy bribe gets a stem cell re-infusion for one brave girl
On the day of the re-infusion, emergencies in the clinic kept the Miskins waiting for over six hours — a tough wait for an active five year old girl. So the Miskins pulled out a bribe. If Talya could make it through the prolonged re-infusion of her own stem cells, which would take almost 8 hours, they would take her out for her favorite treat — Chinese food! Talya bravely agreed.
A new hope: Talya makes great progress
Now, almost a year later, Barry and Rita have proudly watched their daughter's gross motor coordination noticeably improve. "Talya can walk up and down stairs without wobbling or falling. She runs with a virtually normal gait. She is so much stronger and more coordinated on both sides on her body, particularly on the right side." Talya's thought process has also become more advanced. "Rita called me the other day because she put Talya in the tub and Talya said, 'The water is too cold, put some hot water in!' This may not sound like much to other parents, but this is amazing to us. We can't believe how she is putting things together and remembering things."
Barry says that while the evidence of Talya's improvement post re-reinfusion is considered anecdotal by medical standards, what he's seen in his daughter is miraculous. "In my heart of hearts, I believe the two are directly related."
So what's next for the Miskin family? While they continue to track Talya's progress, they are hopeful they may someday be able to take her off her anti-seizure medication, which tires her out. They are also hopeful that in the future, research will uncover ways to target the stem cells even more directly to the areas of Talya's brain that were injured by the stroke. For right now, though, Barry and Rita are enjoying watching Talya improve and grow stronger. They're also enjoying a lot of Chinese food.
*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.