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.
*UPDATE*
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!
*UPDATE*
Photo of Lillian, thanks to her mom Kahla!
Submitted on 2010/08/20 at 1:26pm
The story about Lillian being treated with her cord blood for Cerebral Palsy was incredible and inspiring. Keep up the great work Lillian!! I wish her and her family all the best.
That is truly amazing and I can’t possibly imagine how anyone can judge Lillian’s parents negatively.
This is a great story. Nobody thinks that something will happen to their child. But, you never know. They are making significant strides EVERY day!!
WHAT A WONDERFUL UPLIFTING STORY. GOOD FOR YOU & YOUR FAMILY LILLIAN!!!!
I FEEL SAD FOR THE PEOPLE OUT THERE WHO ARE CLOSED MINDED TO THE IDEA OF PRESERVING CORD BLOOD – WE ARE CLIENTS OF VIA CORD. IT’S ALWAYS BEST TO BE PREPARED!
WHY DON’T ALL PARENTS CATCH ON ALREADY!!!!! IT’S WORTH EVERY CENT!!!!
CONGRATULATIONS TO LILLIAN & HER FAMILY
WHAT A TESTAMENT TO VIA CORD!!!!!
Can my daughters cord blood be used for a family member ?
Azalea, it is possible. If there is a need for transplant, the transplant physician would make that determination based on HLA matching.
What is HLA matching? How could someone get started with this process?
Tiffany, the National Marrow Donor website provides a detailed explanation of HLA matching. In summary, your immune system uses HLA markers to recognize which cells belong to your body and which do not. A close match between the HLA markers between a recipient and a donor reduces the risk that the immune cells will attack one another which can lead to Graft Versus Host Disease (GVHD) or rejection of the graft. In the case a child uses his/her own stem cells for treatment it is a perfect HLA match and the risk of GVHD is eliminated. In order to find out if two people are a match I would recommend discussing with the treating MD to facilitate.
Can my son’s cord blood be used for my daughter? If it is possible for Azalea’s daughters cord blood to be used for a family member, couldn’t my son’s be used for his sister?
Hi Jana, a physician would have to determine whether or not it can be used and it will depend on a number of factors. First, it depends on the condition that needs to be treated. In some cases a sibling’s cord blood can be used to treat certain cancers, blood disorders, and immunodeficiencies. For a complete list of diseases that are treatable with cord blood, click here. In the case of Lillian, the young girl featured in this blog post, she needed her own cord blood to participate in this experimental study to treat Cerebral Palsy, because that is what was required for the study. Second, it depends on HLA matching. I explained what this is in my response to Laura above. The odds of siblings matching eachother are the best out there, so if a stem cell transplant is deemed necessary then using a sibling as a potential donor is absolutely considered.
Thank you for the information! My daughter has cerenral palsy, severe extensive brain damage, microcephaly, partial complex seizures, and microcephaly. The “click here” link included in your reply was not working. If there was an HLA match, could any of these disorders be treated with her brother’s cord blood at this time? Thanks again–we’re constantly looking for ways to help our little princess!
You can give your daughter’s blood for another family member for certain illnesses and diseases, but unfortunately not CP. My son has CP, and when I became pregnant with my daughter I asked the cord blood bank, and they said not to treat CP. It has to be the child’s own.
Bless you Lillian and your parents too!! I truly hope that
Kahla is OK now. I wonder if Kahla’s cord blood could have helped her recover from her injuries at the time.
Either way a cord blood kit needs to be standard equip.
for every birth. Gee do you think the insurance companies could be convinced of this?
I am amazed at her progress! What a blessing. My prayers are with you for continued advances.
The only problem with Viacord is their cost, which prohibits many parents from even thinking about banking. There are other cord banks that charge a lot less, including no annual storage fees. See the parentsguidecordblood.org for an objective view of pricing. Of course, if this blog is sponsored by Viacord, my posting won’t be around for long!
Irlg, thanks for your feedback. We do offer families pricing options through our flexible payment plans. We also offer a unique program for families in need of a transplant. Visit our Sibling Connection Program to learn more. And we also encourage everyone to visit http://parentsguidecordblood.org/.
Irig, I must say, the cost was a daunting issue for my husband and I. We did “shop around” and flip flopped on whether this was something we could even affford. Ulitmately we chose Via-Cord specifically for the research they were performing in the area of heart disease. This was just under 4 years ago. My husband’s family has a HIGH rate of heart disease and I thought, the worst thing that I could ever experience in my life would be outliving my child. With the speed in which they are advancing in this field, who’s to say that they won’t have a cure should he be diagnosed. The peace of mind I have is priceless.
I wholeheartedly agree.
I am the Mother of two fantastic daughters, and now the Grandmother of two fantastic granddaughters. From the moment I heard that each of our daughters were pregnant I began researching cord blood banking. I was very impressed with Via-Cord and I purchased the program for each of the grandchildren.
There are so many gifts a Grandparent can give but for us “this gift of life” was the very best one that we could think of. Hopefully neither Granddaughter will ever need it but if they do it is there.
I would encourage other Grandparents to think like we did, and for expecting parents I would encourage you to speak to your family about it.
I certainly think a Via-Cord Shower would be a great way for those who need help financially to ensure that they get the help that they need.
God Bless you Via-Cord and keep up the great research.
The doctor and nurse attending my delivery and collecting the cord blood using Viacord’s instructions and collection kit were very impressed with the complete accurate instructions and kit. They even made the comment that they were going to recommend ViaCord in the future, because of the excellent instructions, kit, and service from the Viacord staff. I think that’s worth apremium price!
It’s sure is a good story. There’s not enough of them around.
I absolutly LOVE hearing these stories. I have a 6 year old son with mild CP. I did not save his cord blood. We have saved his little sisters though in hopes that someday we can use it on him. I hope that someday comes soon though as I always feel like we are wasting valuble time waiting!!
Good luck and I hope you continue to see improvement!!
Laura, I’m in the same situtation. My 2 yr old daughter has CP. We did not save her blood, but we do have her little sister’s. I’d like to know if there is anything out there right now that we could do? Are there any clinical studies planned that would use siblings cord blood?
Hi, Tiffany. There is no current trial that uses sibling cord blood stem cells for CP. However we have heard from many families in this situation and Duke is keeping a database for potential future notification if anything like that is ever considered. I will follow-up via e-mail with contact information so that you can be put on Duke’s notification list.
Kate, I would like to be put on the notification list for studies involving siblings with CP. My daughter is 16 with CP and seizure disorder. We banked her little brother and little sister’s cord blood with Via Cord.
Hi Brandy. I sent you an e-mail in response to your comment.
Hi Kate,
I am in a similar situation. My 5 1/2 year old daughter has CP and we do not have her stem cells but have her 3 year old twin brothers cord blood cells. Would it be possible to also get on that notification list? I pray every day that this will one day be possible! Thank you!
Jill
God bless. This is a truly beautiful story. Someone send Brandon’s father a fruit basket, lol! What a terrific grandpa.
Positive thoughts and heartfelt prayers that Lillian keeps improving, growing, and thriving with the help of that cord blood. And God bless whoever invented cord blood in the first place. I suspect we haven’t even begun to see what it can do.
I would like to see Lilian’s photo today.
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!
Hi Kahla, I would love to keep in touch with you. My daughter is 3 and has CP. She also just turned 3 in March. We didn’t bank her cord blood, but did bank her sisters in hopes that can be used one day. I would love to know ho Lillian is doing and about her progress. Please email me anytime.
I so agree with you about how you never know. We went back and forth about whether it was a waste of money or not and decided it wasn’t. It’s insurance and we spend a lot insuring our houses and cars, why not our children? So, we banked the cord blood of both of our daughters. Then after our second daughter was born we learned she has a serious heart condition called Hypoplastic Left Heart Syndrome. Maybe someday Lauren’s cord blood will grow her a new heart. You just never know. We are so glad that we have the chance someday, though!
I am very proud to say I am Lillians great aunt. The progress Lillian has made is so amazing!!! I am looking forward to taking her to her first Disney trip this summer. I can’t imagine why anyone would not bank their cord blood.
My 2 year old son has CP, we did not bank his cord blood. We are expecting again in about a month and will be banking the cord blood in hopes that someday we can use it to help our son. Please help me find out how to locate clinical trials using sibling cord blood. Thank you.
Hi, Deb. There is no current trial that uses sibling cord blood stem cells for CP. However we have heard from many families in this situation and Duke is keeping a database for potential future notification if anything like that is ever considered. I will follow-up via e-mail with contact information so that you can be put on Duke’s notification list.
Can you please send me the info about Duke’s notification list for sibling cord blood? My daughter is 3 and has CP but we did not know about banking her cord blood. I had my 2nd child 4 months ago and we did bank her cord blood with Viacord. I would love to know if any trials are being done with sibling cord blood.
Hi Nicole, there is no current trial that uses sibling cord blood stem cells for CP. However, I will follow-up via e-mail with contact information so that you can be put on Duke’s notification list.
Keep up the good work LIllian! I was wondering how old Lillian was when she had her infusion?
Hi I am a young adult with cerebral palsy cord blood treatment is a new concept to me. I thank you for sharing this information
you can learn more about me here http://lifeofthedifferentlyabled.com/2010/the-person-behind-lifeofthedifferentlyabled-com/
Laura, thank you so much for your comment and for sharing your story with us – you’re a very inspiring young woman. Wishing you a very happy new year, from all of us at ViaCord!
My daughter has CP. She’ll be 2 in 4 months and is not walking nor crawling
. Unfortunately, we didn’t save the blood cord. What else can be done to treat CP. Who shall I call?
Hi Irma. Thanks for reaching out. Speaking with your daughter’s Pediatrician about alternative therapies for her CP may be the best way to go. Wishing you well.
Hi there! I just recently chose to donate my son’s cord blood to a cord blood bank (stemcyte.com) and I cannot tell you how happy I was to find this blog post. It reassures me that our decision was right in doing so. I am so thankful that your daughter is getting treatment this way.