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.
Thank you to all the contributors for sharing their personal stories.
If you have an experience with cord
blood collection or its use, please consider sharing
your story here.
Thank You to the Blood Bank & Cord Blood Donor Bank
Our eldest daughter was diagnosed with T-cell Acute Lymphocytic Leukemia (ALL) in June of 1997. She was 16 ½ and had just finished 10th grade. She/we spent the better part of the summer at Seattle Children’s Hospital where they did their best to kill all of her blood cells. Her blood type was A positive. In order to keep her alive, she needed many transfusions of packed Red Blood Cells (PRBCs). (Thank you to the many donors, who well exceeded our family’s donations.) She was in remission after just a couple of weeks and stayed that way throughout the 2 ½ year chemo protocol. She graduated from high school and was looking forward to starting to college in the fall, but when they did the final bone marrow draw to confirm her remission, we discovered that she was relapsing. This would require a bone marrow transplant.
The search for an unrelated donor was started immediately, but there wasn’t anyone in the international donor bank that matched her slightly unusual set of HLAs. No better match than 7/10 HLAs was found. Neither of us parents were an adequate match (parents can generally only match 50% - a terrible match) and our other daughter was an even worse match (she seemed to have gotten the opposite mix of our genetic dice), though siblings have a 1:9 chance of matching. She also had to start a new nasty chemo protocol that got her back into “remission”, but had to be repeated every two months, each time with a 20% chance it wouldn’t work again. This, of course, required many more units of PRBCs. (Thank you all again, donors). During this time, we worked with Suzanna Dentel at the Puget Sound Blood Center (PSBC) and arranged to have an HLA typing drive in conjunction with a regular blood drive in our small town. The turnout here exceeded many that were held in big cities. (Thank you, Anacortes). Though no one here was any better of a match, I have heard that at least one person typed that day went on to donate to someone else’s precious child. (Thank you, Thomas.)
In talking with the National Marrow Donor program, my husband found out about transplants from cord blood. (Thank you NMDP). He spoke with Dr. Kurtzberg at Duke University (who pioneered the use of cord blood for transplants) and Dr. Wagner at the University of Minnesota (who was compiling all of the data from all cord blood transplants done anywhere) who each spoke to him for over an hour. (Thank you Dr. Kurtzberg and Dr. Wagner). They told us that the transplants from cord blood were much more flexible than from unrelated donors, one reason being that the cord blood circulates through both the baby and mother without attacking either. We opted to go to Minnesota for her transplant, and a 5/6 matching cord was located (a good match). (Thank you to whoever donated their cord & placenta to the St. Louis cord bank! All we will ever know about the donor was that the baby was a girl, blood type O positive.)
The pre-transplant chemo and radiation really did kill all of her blood cells (and her hair cells, skin cells, finger and toenails, etc.) and she lived on donated PRBCs and platelets for the better part of 3 months. When her platelets were so low, she would bruise just from light touches, and her arms were always bruised from simply laying them on the armrests of chairs. (Thank you, thank you to all of these whole blood and platelet donors.) She received her new stem cells in a very anti-climactic transfusion on February 22, 2000. The recovery was long with much discomfort, but she was able to come home to Washington in June. She has needed no further blood products, but we are all huge supporters of the PSBC. (Thank you again, PSBC.)
She started back to school in the fall of 2001, got her BA in 2003, and finished her MA in 2005. She is now blood type O positive, and is healthy and happy and working in Portland.
And in case I forgot to say it: THANK YOU !
Annette - 6/30/10
Hunter's Story
My son Hunter was born with a clean bill of health. However, he began to show problems with his left side around 4 months of age. When he was 5 months old he was diagnosed with Cerebral Palsy in the form of Hemi-Plegia. Hunter had suffered a stroke and is known as a “left side Hemi kid.” According to the Neurologist at Cook Children's Hospital and at Duke University, Hunter most likely had suffered his stroke in Utero. Luckily for us, we had made the decision to bank his cord blood 12 hours prior to his scheduled C-section delivery. Because of this decision to bank his cord blood, Hunter was given a Cord Blood Auto-reinfusion on 28 July 2009 at 18 months of age at Duke University. Prior to this infusion, Hunter could only scoot around on his butt and right arm as he is in this video link of him prior to the infusion at: http://www.youtube.com/watch?v=5GGlQdgbwq8 and on 18 December 2009 he took his first steps on his own at: http://www.youtube.com/watch?v=SQ2I2oq3ePE . On 9 January 2010 he started walking for good. Hunter is now 29 months old and is getting stronger every day. This is a video of him from last week at the doctor's office pushing a stroller: http://www.youtube.com/watch?v=nKVDTQGJUUE . Obviously we are very proud of Hunter and he is my hero. We have documented his story from the day that we found out about his eligibility for the Cord Blood Auto-reinfusion on his caringbridge website at: http://www.caringbridge.org/visit/hunter-moore Please feel free to visit it.
Glenn - 4/29/10
"Walking is right around the corner" for Jack since his cord blood reinfusion
Our son Jack is now three years old. When he was two he was diagnosed with cerebral palsy. After a year of therapy, and not a lot of progress, we started looking into options to use his cord blood. We found and were accepted to a study being conducted at Duke University. At two years old, just prior to the cord blood reinfusion, Jack was not sitting up and saying only one to two word sentences. He had a lot of tone on his right side. Today, after seeing Jack, our doctor who was not a believer, told us that she is now a believer in cord blood and the benefit of stem cells for cerebral palsy! Jack's progress is amazing. After just seven months he is sitting up, having conversations with us, singing songs, pulling up to stand and walking with a walker. Our PT told us that "walking is right around the corner" for Jack. Best of all -- he is a sweet, happy boy and we are thrilled that we were able to help him by saving his cord blood.
Jacque - 3/10/10
We're so grateful we banked Luke's cord blood.
Our son Luke was diagnosed with cerebral palsy when he was 12 months old. Luckily, we had banked his umbilical cord blood with a private bank. Soon after he was diagnosed, we heard about a study going on at Duke University where they were using umbilical cord blood to treat children with cerebral palsy. Luke had his umbilical cord blood reinfusion when he was 15 months old. In the 7 months since his reinfusion he has made great progress. His awareness of his right hand is much improved and he is even running! We only had one chance to bank his umbilical cord blood and are so grateful that we did.
Rachel - 3/8/10
We found private banking surprisingly affordable
My husband and I are expecting our first child in May and we'd heard about cord blood collection but assumed it was far too pricey for us to do. We're a middle income family, rent a house, have debt, etc. Just like everyone else, right?
When we received our hospital registration forms and birthing plan from our midwife, there was also a packet for a private cord blood bank with some information and a discount. I figured I'd at least read the info and maybe talk to them.
I was shocked at how affordable private banking is. This company provides multiple payment plan options, none of which start until the baby is born. That cinched it for us.
We're going to be privately banking our baby's cord blood (and any future children we have as well) and we think this is one of the best decisions we could make for our child.
So, to anyone out there who lives paycheck to paycheck, there are affordable private banking solutions. At the very least, public banking is free and you'd be donating something that would be thrown out anyway.
I truly believe, after reading about all the diseases that can be treated and even cured with cord blood, this is one of the most important things a new parent can do.
Tristina - 2/11/10
This amazing science is out there and working!
Our son was born 8 weeks premature and suffered a stroke-like event. He was not hitting major motor milestones by about 10 months, we became quite concerned. I started seeking information about his condition, called PVL (Periventricular Leukomalacia). We were told by every doctor, ped neurologists, etc. that nothing short of physical therapy could help him.
I did not like that answer and searched on, deciding to call our cord blood bank to see if they were aware of any studies on cord blood stem cells and birth brain injury. Low and behold, there was a current study and we enrolled right away.
Through therapy our son did improve greatly but we still wanted to undergo the cord blood transplant to help him in the areas that we were most concerned, mostly his motor coordination.
He is now what I would call 100% typical. (Hard for a mother to say otherwise) We may not know for sure what improvement was due to stem cells and what was due to his own hard work, because our son was a more mild case. I do know this therapy has helped so many children who were much more severely affected. It is a wonderful thing to know that this amazing science is there and working!!
I urge everyone I know having a baby to bank their child's cord blood and especially if you have any complications that may result in premature delivery. Preemies have an increased risk of birth brain injury. Please research this yourselves, you will see how many new diseases, injuries etc. stem cells are treating.
(As a side note, our insurance company covered this treatment 100%.)
Jill - 11/6/09
Every Cord is Important
My name is Tammy Hart Dyer and I am a 41-year-old Caucasian mother of two living in Nashville, TN. In November of 2007, I was the fourth adult at Vanderbilt University Medical Center to receive a stem cell transplant using donated cord blood to treat Non-nasal NK/T-cell Lymphoma. I was not supposed to live, but thanks to one kind individual and the collection center in New York City, my life was saved and I was able to see my oldest son graduate from high school this May.
Currently, the National Marrow Donor Program and other organizations supporting the collection of cord blood are putting a large emphasis on attracting donors with diverse racial or ethnic backgrounds. This is because the markers used in matching are inherited, so patients are more likely to match someone from their own race or ethnicity. But we shouldn’t let this lull us into thinking that only donations from racial minorities are needed. Every cord is important and we should save them all from the trash.
The truth is that – even with a registry of millions – people die every day because they could not find a match. When my doctors and I made the decision to move forward with the bone marrow transplant, the hematologist told me there was an 80 percent chance that a donor would be found in the bone marrow registry for me. It was not. Fortunately, there are initiatives like the New York Blood Center’s National Cord Blood Program that made it possible for someone to donate her child’s cord blood, store it for posterity, and give me the life-saving treatment I needed.
So many lives could be saved through this simple process of cord blood collection. So many more mothers and fathers could have the gift of watching their children grow up, and the cost is so minimal.
Two years after my initial diagnosis, I am committed to spreading the word about the many life-saving benefits of cord blood collection. We can save thousands if we just get the word out. So many people are just unaware that it’s a choice they can exercise. I hope you’ll join me, and Save the Cord Foundation … save a life.
Tammy - 6/15/09
Our Ladybug Katia
At the age of 2, our daughter Katia began having swelling around and under her right eye. This became larger and significantly changed in appearance over a couple of months.
Following surgery to embolize the blood vessles (cut off the circulation to the tumor), Katia suddenly became very ill with fevers and just seemed out of energy.
In the ER, they tested her blood and spinal fluid and admitted her, telling us they were concerned for meningitis. Two days later, we were told our little two year old had acute myelogenous leukemia. She went through 5 months of intensive chemotherapy, which made her very ill but also brought her into remission which was an answer to our prayer.
For months we went for blood work, which indicated she remained in remission. She would get admitted for fevers or infections but she did stay cancer free.
However, in August 2003 she became ill and the cancer was back, very suddenly and very aggressively. We were told only a bone marrow transplant would be her chance of a cure.
Our family was tested and nobody matched her so we looked to the registry. Katia is multi-cultural. We knew the chances of finding a match were very slim, so we worked with our local blood centers and the National Marrow Donor Program to put together blood/marrow drives. We went to the media to share Katia's story and let people know there were many people in need of a match every day. A lot of people came forward. For months, no matches were found and Katia remained in the hospital.
Near the end of December 2003, a 5/6 match was found in cord blood. Katia was scheduled for transplant in January 2004. She would be just turning 4 years old.
However, a fungus turned up in her lungs which needed to clear up before transplant could take place. Katia under went a lobectomy to remove the area where the fungus was located, and the transplant was rescheduled for February 5, 2004.
The transplant was so long awaited and anticipated. The process is not much more than a blood transfusion, but the overall feeling is much like watching your baby be born again. It is seeing them have a new chance at life and the wonderful gift of someone donating that cord or their marrow.
Katia had issues pretty quickly with rejection of her transplant so she was put on anti-rejection medications. After 248 days in the hospital, she was allowed to leave the hospital and go to the Ronald McDonald House behind the hospital!!
It was our practice area before being released to go home. Throughout all of this I journaled online and everyone who read that was just as happy as we were that we were finally released :)
Katia would go back and forth to clinic every day to get her blood counts checked which was a good thing because some days her anti-rejection medicine counts were totally off and could have become dangerous had they not been checked. She was still in need of blood and platelet infusions at this time. However, Katia was very happy to be outdoors and free.
Katia is now 9 years old - 5 years post transplant. She has rejection issues still, mainly on her skin and with her eyes. Her corneas have quite a bit of "wear" on them which cause a lot of sensitivity to light.
Katia's growth has been very stunted since her relapse at age 3. She is 3'3". She has received quite a lot of radiation to her spine and brain as well as the orbit of her eye. She has been on steroids since early 2004 for rejection issues. She has osteoporosis due to treatments and steroids. She is slowly being weaned from the steroids, and at this time is on the lowest dose ever and her rejection is showing the best progress ever.
She has a Home Bound school teacher as she has a very suppressed immune system still.
Katia is a very caring and compassionate 9 year old. She loves her family, adores her doctors, her teacher and like all kids her age, she loves to play. She has a little 2 year old puppy, Fozzy that makes her very happy.
Katia has always been known as "Ladybug Katia" and says when she grows up she was to be a veterinarian.
Katia has been a symbol of hope to many, but to me (her Mom), she is my HERO!
Tracy - 6/2/09
Logan's Story
My name is Megan and cord blood saved my son’s life. I live in Michigan with my husband Dave and our 19 month-old son Logan. Logan was born with a rare genetic disorder called Hurler syndrome.
Only one in 100,000 children in the world have the disorder. Children with Hurler are missing an important enzyme that breaks down substances in the body. The disorder attacks the joints and organs, and without treatment, will kill a child before the age of ten. Logan was born with hearing loss so from the very beginning, we knew that Logan had medical issues. However, we didn’t know the extent of it. When Logan was nine months old, a physical therapist noticed that his arms were stiff and they sent us to a medical specialist. The specialist evaluated Logan and ran blood tests. The diagnosis of Hurler was devastating for our family. The doctor was unaware of any available treatments and told us there was nothing we could do to save our son. We were in shock. How could our baby be sick and there be no medical option or treatment available? We refused to simply let our son die.
As soon as we got home, Dave began searching the Internet for information on Hurler. He came across a website that led us to contact Duke University Hospital about their cord blood study. Duke University Hospital is one of two hospitals in the country that perform cord blood transplants on children with Hurler. Dr. Joanne Kurtzberg is chief of the blood and marrow transplantation division of the pediatrics department at Duke. We emailed her and she responded within three hours. She told us to bring Logan in immediately. In July of 2008, we flew to North Carolina. After necessary testing and chemotherapy, Logan received the transplant of donated cord blood stem cells. The transplant was a success!
Logan's body accepted the new blood and now carries the missing enzyme. The recovery was not immediate and we almost lost Logan. His body filled with fluid and he was put on a breathing mask. But thankfully, he pulled through! Logan is doing magnificently now. Logan's transplant was early enough so there was only minimal damage done by the disease. He is developing and progressing every day. We are so thankful to Dr. Kurtzberg, the medical team at Duke, and for our friends and families. Logan’s specialist didn’t know about the cord blood treatment option and it almost cost Logan his life. Kids die every day waiting for cord blood transplants. Please talk to your friends and family about banking or donating cord blood.
A cord blood donation saved my child’s life, and by increasing awareness, I know that we can save many more.
Megan - 5/22/09
