While obtaining my MBA in 2003, I did a project on cord blood banking. At that time, I learned about the process and potential of the stem cells contained in the cord blood. It was then I knew I would save cord blood for the children I would have in the future. For years, whenever the topic was brought up, I was an advocate. Little did I know then that cord blood would change the path of my family.
My life took an unexpected turn on May 16, 2008. I was 18 weeks pregnant, and we were very excited for our gender scan. That was the day the daughter I was carrying was diagnosed with hydrocephalus. Our maternal fetal medicine specialist (high-risk OB) said her case “was as severe as they come.” Hydrocephalus is an over-accumulation of cerebral spinal fluid in the ventricles in the brain. Receiving the news that there was a serious complication with the brain was devastating.
Once I dried my tears, I began to research online. It wasn’t long before I came across a blog that detailed how cord blood had been re-infused into a handful of babies with hydrocephalus in an experimental procedure. The infusions were new, and there were no clinical trials substantiating that cord blood could help repair brain cells damaged by hydrocephalus. However, the promise was certainly obvious to me. I discussed this with our high-risk OB, as he would be the doctor to deliver my daughter. He was very positive and encouraging about us banking cord blood for our daughter.
My next step was determining where to bank. I called several different family banking companies. It was of the utmost importance I found a company with integrity and pioneering techniques in regards to retrieval and banking. I felt Cord Blood Registry would be the best choice for our family, so we ordered our kit.
Over the months after diagnosis, we watched my daughters’ ventricles get substantially larger scan after scan. At our 30-week appointment, her head circumference was measuring 42 weeks (larger than a term baby). So, we opted to deliver early at 32 weeks, 6 days, to place a shunt in her brain to help drain the fluid.
Parker had her share of problems associated with prematurity and also those of massive hydrocephalus. It was humbling and scary to see the images of Parkers’ brain compressed into a fine sliver, while the vast majority of her head was filled with fluid. Parker was diagnosed with optic nerve hypoplasia and nystagmus. The combination of the two conditions would mean Parker would have significant visual impairment or blindness.
After a month in the NICU, our family made plans to travel to Duke University to have Parkers’ own cord blood stem cells re-infused as part of an experimental procedure.
At discharge, our neonatologist felt compelled to have a frank discussion. I suppose my positivity was concerning to her. She said, “I know you are headed to Duke and very excited. However, I want to make sure you know Parker will never develop past infancy mentally forever.”
Talk about a punch in the gut. But the cord blood re-infusion was actually a breeze. Because these are autologous (her own cells), there is almost no risk of immune complications associated with re-infusion like you would find with a donor cord blood infusion. In theory, when re-infused, those cells will find their way to damaged parts of the body, but scientists are still working to prove this theory.
Parker is now 7 and in first grade. She does have some developmental delay, but she is learning to read, gaining math skills, and loving life.
We don’t know what role if any her stem cells played in her visual improvement, and she’s had lots of other therapies, but I am forever indebted that we had the opportunity to collect and store cord blood and perhaps unlock the potential of these stem cells.
My “I Banked!” badge is more than a sticker on Baby Center. It represents hope and opportunity.
My name is Amy Hendrix; however I’m more commonly referred to as Parker’s mom or TurtleMom. My days are filled loving life and my family. I’m an advocate for children with special needs, cord blood banking and strive to bring awareness to hydrocephalus.
CBR® is the world’s largest newborn stem cell company. Founded in 1992, CBR is entrusted by parents with storing samples from more than 600,000 children. CBR is dedicated to advancing the clinical application of cord blood and cord tissue stem cells by partnering with institutions to establish FDA-regulated clinical trials for conditions that have no cure today. Follow CBR on Facebook.
This post is sponsored by Cord Blood Registry.
