Read people’s experiences with cord blood collection and its use
Cord blood is changing peoples’ lives every day. But there’s a long way to go to make cord blood collection the standard of care in the U.S. By sharing their stories here, our contributors are helping to educate and inspire others to value cord blood as the life-saving resource it is.
‘We need to educate every parent, help get every hospital and doctor on board’
By: Natalie · April 24, 2017
I had a son in 2010, and another in 2014. Leading up to both of their births, left and right I was handed information on banking my children’s cord blood. With my first son, I wondered if I might be able to just donate the cord blood since it could still help someone and I didn’t have the funds to bank privately. I figured if I added to a pool, that if we ever needed a match ourselves, hopefully someone else would have donated into the pool as well. I asked my doctor and she verbally informed me about publicly donating. The catch was that our delivery hospital didn’t have a donation site on-site, so we had to go to M.D. Anderson, fill out some paperwork, take this kit that looked like a cooler to my doctor, get her consent, and then within an hour or so after the baby was born, my husband had to drive this cooler with the umbilical cord in it back to M.D. Anderson. It was quite a process, but it meant a lot to me to do it since I have a small fear with needles (which makes giving blood a dramatic experience), but in the case of the cord blood, I thought, it has to come out anyway, so I need to donate this to help save someone’s life. It was a big deal to me to donate the cord, since there wouldn’t be as many windows of opportunity like there is when giving blood.
In 2014, for the birth of my second son, it was a no-brainer to ask my doctor to consent to the public donation again. She said it was too much and said she didn’t want to do it that time around. I was shocked. I cried. She was keeping me from being able to save someone’s life. I loved my doctor, but I also had put this as a priority. I made the decision to switch doctors, and to make it easier, I switched to a doctor that would deliver in a hospital where it was standard practice to ask for public donations. It wasn’t that smooth to switch over though. I had all these issues with my insurance being accepted at participating doctor’s offices. Being pregnant and full of emotional passion, I called M.D. Anderson frequently. They were so kind in helping me find my way. I simply had to find a doctor that would deliver in a participating hospital, in case we would yet again have another child, so that the doctor would always be “willing” to get the donation. Eventually, I was able to work out the insurance and found a new doctor.
Through it all though, I was shocked by the unwillingness of my first doctor to continue with the process of a public donation the second time around. I was also shocked to learn that only a handful of hospitals actually participate in public donations. That means that hospitals, that are supposed to be in the business of saving lives, may actually be throwing away someone’s perfect stem cell match. They are throwing away someone else’s ticket to live! Every cord thrown away represents the life of another to me. What shocking numbers and stats could be thrown out there in a news story, or pamphlet!
Anyway, because of my experience, I have become so passionate about cord blood donation. I have educated all my friends, and opened up their passion. All of them told me that they would not have known anything about public cord donations, so much as about the difficulties in donating publicly, if I had not informed them.
We need to educate every parent, help get every hospital and doctor on board, help build the infrastructure for smooth process, help draw the media to this topic, and so much more!
Good news reports:
1. One of my friends called me right after the hospital told her her son’s cord blood was a match for someone with Leukemia!
2. My mother-in-law used stem cells to regenerate tissue in her shoulder after surgery, and it did!
Bottom line: stem cells bring healing and save lives!
‘The families who chose to donate their babies cord blood have saved my life.’
By: Linda · January 11, 2013
In November of 2007 I was your ordinary stay at home mom to three small boys. I got the shock of my life when I was diagnosed with Philadelphia positive acute lymphocytic leukemia (Ph+ ALL). This subtype of leukemia generally has a poor prognosis. I initially spent 57 days in the hospital and received aggressive chemotherapy. I was in and out of the hospital several more times over the next five months. I went into remission and it was determined by my doctors that I needed a bone marrow transplant to survive.
My two sisters were tested and neither was a match. We then searched the national bone marrow registry. There are millions of people on this registry but unfortunately, no match. My family and friends held numerous bone marrow drives. While they were able to add hundreds of people to the registry, there was still no suitable match for me.
At this point we were running out of options. My husband began researching other options and other hospitals. He spoke to Dr. Anthony Stein at City of Hope Medical Center in California and he thought he may be able to help me with a cord blood transplant. The great thing about cord blood transplants is that the match does not have to be as exact as in a live bone marrow transplant. As an adult, I needed two donors and he was able to find two matches for me. I flew out to California in July of 2008 and spent the next four months there.
It has been 4 ½ years since my cord blood transplant and I am happy to say that I am doing very well. The families who chose to donate their babies cord blood have saved my life and gave me the opportunity to see my children grow up. Words cannot express my gratitude to these generous people. My life was saved by a cord blood donation but many people die while waiting for the right match. I urge everyone to make the choice and save your baby’s cord blood. You have the opportunity to give the greatest gift of all and possibly save a life.
Life saving stem cells are discarded everyday. I’m so thankful my match wasn’t!
Deb · November 20, 2012
My story starts in 1998 with a stage 3c breast cancer diagnosis;36 years old, married with 4 children (11, 9, 6 & 4). The radical treatment in the late 90’s included an autologous transplant (receiving my own stem cells). The risk with that, in addition to all of the possible transplant complications, was to potentially get another cancer in the future. As you can imagine, saving my life in that moment, was my immediate concern.
I lived 9 years cancer free. In 2007, I was diagnosed with acute myeloid leukemia. You have a short window for treatment with AML, about 3 months. I was immediately admitted to the hospital for a week of induction chemo. Meanwhile, the search for a bone marrow donor was underway. My only full brother was not a match. My oncologist had a colleague doing some of the leading research on cord blood transplants in adults. We went to see him and decided, if a match could be found, it was the best protocol for me.
The search ensued and a beautiful match was found; 6 to 6 antigen, domestic and the largest cord blood donation they had seen. Perfect for a small adult like me!
5 years later, I am in remission. I have a new blood type and I’m allergic to cashews! I have had no graft versus host disease (there is less of a chance with cord blood because it doesn’t have the antibodies an adult donor has). I’ve seen high school and college graduations and, Lord willing, will see my oldest son graduate from law school this spring.
Please keep spreading the word to expectant mothers!!! Life saving stem cells are discarded everyday. I’m so thankful my match wasn’t!!!