Reinforcement from a ViaCord Mom

RebeccaWhen Julie and Jason heard about a research study re-infusing children with their own cord blood stem cells to help treat cerebral palsy, they were thankful they’d saved their daughter’s just years before. Rebecca was born with a neurological impairment that causes difficulty speaking and using her limbs. Despite having the physical ability to do so, Rebecca’s brain prevents her from executing familiar and learned movements. Although verbal communication may be a challenge for this bright five year old girl, her constant smile, big hugs and love of playing with other kids says it all – Rebecca is one of the happiest, healthiest, and friendliest little girls you could ever meet.

In July 2009 Rebecca received a re-infusion of her own cord blood stem cells in the hopes of improving her condition. Though Julie and Jason have not seen much progress in Rebecca since the re-infusion of her cord blood stem cells, they wanted to share their story with us to show that despite the outcome, they would do it all again. Here’s Rebecca’s story, as written by her mother, Julie:

“When we found out we were pregnant with our first child, like any other family, we were excited! As we got closer to the delivery date, we learned about cord blood banking from pamphlets at my doctor’s office. None of our friends or family had done it, so we had to do a lot of research. While the upfront cost seemed a bit much, the yearly cost to store the cord blood wasn’t much. Plus with all the studies that had been going on with cord blood we thought it couldn’t hurt to save it. In our minds we thought “What if something happened and it could help our daughter out someday?” That’s why we decided to save her cord blood.

I was 41 weeks pregnant and our daughter had no plans of coming out. After an induction, 20 plus hours of labor, two epidurals and still no baby, the doctors decided to perform a C-section, determining that the umbilical cord was wrapped around her neck. At 11:59 P.M. on October 17, our little girl was born sunny side up (face up instead of down) with the cord around her neck. Given all that she and I had gone through Rebecca appeared perfect. The doctors ran some tests to check on her condition and the results came back fine. They deemed her a healthy baby girl!

Being our first child, we didn’t know all the signs to look for to see how Rebecca was tracking developmentally. At every doctor’s visit she seemed to be missing milestones which was quickly followed by a “She’ll catch up.”, response from the doctor. Then my mother looked after Rebecca for a week while my husband and I went on vacation. When we returned, my mother told us something was “just not right.” Having raised 3 children of her own, I took her words to heart. At Rebecca’s 15 month check-up, our pediatrician agreed and suggested she see a physical therapist. That’s when our journey truly began.

Rebecca starting walking independently at 22 months, but it became obvious that there were other issues. With all of the physical therapy, occupational therapy and speech therapy she was undergoing, she was walking but still couldn’t talk, couldn’t use a fork or color; she couldn’t do the many things children at that age should be doing. After some genetic testing and seeing several doctors with no conclusive diagnosis, a developmental pediatrician suggested that Rebecca might have Cerebral Palsy (CP).

A couple of years before both my father and Jason’s father had heard a news story about a study at Duke University using a child’s own cord blood stem cells to help treat CP. We started researching and ended up at the University of North Carolina at Chapel Hill to meet with some of the doctors about Rebecca’s condition. Not long after, we got a call that Rebecca had been accepted into the study! Though we knew there were no guarantees, we knew we had saved her cord blood for a reason. If there was a small chance that something good could happen by using it, we had to move forward.

Family Time

The staff at Duke was amazing over the three days we were there. The first day they explained the process, and on the second day Rebecca was re-infused. We were there with two other families, all very hopeful that the cord blood stem cells would provide some help. When it came time for Rebecca’s infusion I sat in the bed with Rebecca on my lap, she was given some Benadryl and the infusion started. Minutes later we were done! We stayed at the hospital a few more hours to make sure she did not have a reaction and then we were released to get some much needed rest. On the third day, we met with the neurologist for one last information session and then headed back home – home sweet home. All in all, it was a very simple process for something that could possibly do amazing things for our little girl.

It’s been 15 months now since our visit to Duke University and unfortunately we haven’t seen much of a response to the cord blood infusion. We were told at the beginning that every child will react differently, and we’re just not seeing the results some other kids have. Rebecca is, however, progressing ever so slowly. She is still not talking but her therapist has hopes that one of these days she will be understood by others. And she still has her limitations which means she can’t always keep up with her normal developing 5yr old friends. Admittedly, it’s hard and frustrating at times as a parent, but when Rebecca looks up and smiles at me, it’s easy to hope that one day it will be ok.

We’ll never truly know if the re-infusion of Rebecca’s cord blood stem cells helped, but I am glad we tried. As we’re not 100% sure of what caused our daughter’s issues, the cord blood treatment was just one attempt to see if we could fix things. I would not take back our decision to save Rebecca’s cord blood. Having it there for our family as an option was important to us. If I could, I would do it all over again. I’d absolutely encourage parents to do whatever they can to help their children, whether it works or not. I encourage all my pregnant friends to save the cord blood because you honestly never know. There are so many successes out there due to stem cell studies, how can you not do it?”

From all of us at ViaCord, thank you for sharing your family journey with us, Julie. Your story and positive outlook is something we just can’t keep to ourselves. Wishing all the best for Rebecca and your family! Hearing from ViaCord families is important to us. Share your story in the comments section below.

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