Lillian's Story: Cerebral Palsy treated with Cord Blood
Surprises. They come in all shapes in sizes. Some are welcome with open arms, and others, well, not so much. Today’s blog post is about one family’s remarkable journey – one filled with surprises – and their perseverance in handling whatever came their way.
For Kahla and Brandon, it all started when Kahla was six months pregnant. She was driving when out of nowhere, an 18-wheeler plowed into her car and broke her pelvis, sacrum and the bones in her thigh and leg. Miraculously, Mom and baby survived the crash.
A second surprise came in the shape of a gift from Brandon’s father. He had wanted to give Kahla and Brandon the gift of cord blood banking. After the accident, he had ViaCord rush a collection kit to the hospital concerned that Kahla may go into preterm labor. But despite weeks of heavy contractions (on top of hip surgery and having a titanium rod implanted in her thigh), Kahla actually went to full-term and delivered Lillian via a planned C-section.
Even though Kahla had her cord blood kit in hand for four months, she “didn’t think much about it”. It would be more than a year before its surprise would unfold.
As a result of the pre-natal trauma, Lillian was born with Cerebral Palsy, which restricted her body movement, particularly on the right side. While Kahla and Brandon dedicated themselves to helping Lillian gain strength and mobility, they searched for something more life-changing that would ultimately allow her to walk.
When Lillian was about 15 months old, Kahla and Brandon were surprised to learn that her cord blood could be the answer to their prayers – a Cerebral Palsy study at Duke University – where children with Cerebral Palsy are treated with their own cord blood. After Lillian was enrolled in the study and her unit was processed by ViaCord for release, in March 2009, Kahla (now 2 years old) received her own cord blood stem cells back into her body. It took about 15 minutes.
While Duke medical staff told Kahla and Brandon not to expect to see any changes in Lillian’s condition for at least six months, they were once again in for surprises. Four days after the infusion, Lillian used her right hand to explore her face, touching her nose, ears and hair for the first time with that hand. Two weeks after the infusion, Lillian pushed up on her knees. Significant transformations seemed to be happening almost daily and now, several months post- infusion, Lillian is almost crawling.
It’s clear that to Kahla and Brandon, that Lillian is responding exceedingly well to her infusion and they are incredibly encouraged by her progress to date. They also continue to be surprised-mostly at how others have reacted to their experiences.
For starters, Lillian’s medical team did not support her participation in the Duke study-in fact, they cautioned against it. But after attending a seminar about the potential of cord blood, they completely changed their views and couldn’t wait to see Lillian post-trial. In Kahla’s words, “just about every doctor in the hospital was in there examining her.”
Kahla is dedicated to spreading the word about cord blood and its life-changing potential. But she remains completely surprised at how so many people don’t want to think about the “what-ifs” in life-even her closest friends. While Kahla wants to make sure that her friends get educated about cord blood banking, she’s meeting resistance, “no one ever thinks anything will ever happen to their kid. I’m living proof to say, ‘hey, you just never know.'”
Many, many thanks to Kahla, Brandon, and Lillian for letting me share their incredible story and for helping to get the word out about the benefits of cord blood banking. And let’s not forget Brandon’s Dad who made this all possible.
Comment From Kahla (Lillian’s Mom)
Submitted on 2010/02/18 at 12:56pm
thanks everyone!! Lillian still cannot walk she will be 3 in march but she has almost total control of her right arm and hand now she can pick up stuff and weight bear on it where before she kept it in a fist and drawn up to her… she can pull up on to things and she does not scissor her legs like she used to she can uncross them herself..march will be a year and i am happy with her progress.. she feel a little behind in december she was diagnosed with rheumatic fever so it put alot of stress on her joints which are already kinda stiff.. but she is doing great!! I would also advise not just the cost of storage but how the cord blood is stored if we would have banked through the other bank we had in mind she wouldn’t have any left.. we used 80% of her cordblood at duke b’c it is stored in seperate bags with viacord we still have 20% left.. some banking companies store it all in one bag so the doctor would have had to use it all in one transfusion .. I’m glad we chose viacord!
Photo of Lillian, thanks to her mom Kahla!
Submitted on 2010/08/20 at 1:26pm