Why We Are Donating Our Son’s Umbilical Cord Blood (After Storing it for 13 Years)

January 25, 2017 in Medical Stories

Umbilical cord

Umbilical cord (Photo credit: Wikipedia)

[NOTE: I used the least gross picture of an umbilical cord that I could find.]

When I was pregnant with Big Dude back in 1997, I didn’t know anything about umbilical cord blood and why people might pay to store it. However, when I was pregnant again two years later, I started to hear more about it and did lots of research. What I discovered is that the stem cells found in a newborn’s cord blood can be used to treat over 80 diseases, including certain types of cancer. Moreover, cord blood stem cells are less likely to cause side effects when transplanted, can be more adaptable than bone marrow and therefore a perfect “match” is not required, giving patients more donor possibilities.

Finding out this information gave us three options to choose at Middle Dude’s birth:

1. Do nothing and discard the cord blood.

2. Collect the cord blood and pay a yearly fee to have it stored privately.

3. Collect the cord blood and have it donated to a public cord bank.

We chose option 2 because even though we knew the chances were remote, we wanted to know that our son and his siblings could have treatment options for certain diseases on the 1 in a zillion chance that he or his siblings would need it. And, when Little Dude was born, we collected and privately stored his cord blood too.

You’re probably thinking right now, “wait, but Little Dude had cancer nine years later! Did you use his cord blood or Middle Dude’s cord blood for treatment?”

The answer to that very good question is NO.

The main reason we did not use his or Middle Dude’s cord blood for treatment is that Little Dude’s cancer was not the type that needed to be treated with stem cells. And even if Little Dude had the type of cancer that IS treated with stem cells, we would not have used his cord blood, but instead would have used Middle Dude’s cord blood, as explained here:

“If a child develops certain genetic diseases or cancers, his or her own frozen cord blood isn’t going to help,” says Arthur Caplan, PhD, a bioethicist and chairman of the department of medical ethics at the University of Pennsylvania. “The cord blood will have the same genetic flaws that caused the disease in the first place, so it won’t be a good treatment.”

While using your own stored blood has advantages – such as reducing the risk of rejection — it has other disadvantages too… Introducing a new set of immune cells from a donor can sometimes be more effective in fighting certain cancers than getting more of the patient’s own.

In other words, there is no reason for us to continue to pay to store Little Dude’s cord blood, because whatever caused his cancer may in fact be in those cord blood cells.

When the recent bill from the cord blood bank showed up in our mailbox, I almost sent in payment without thinking. But, then I realized that we are wasting our money to store cord blood that we will never use.

My husband and I thought, “BUT, what if his cord blood could be used for childhood cancer research and specifically on research regarding the type of sarcoma he had???”

We immediately contacted his physician, and sure enough he agreed and said:

“I do think this is very unusual material to have and indeed could be used to answer meaningful research questions. If this is something you are willing to donate to us, we would certainly be interested in having it.”

DONE.

We are working out the logistics of transferring the cord blood from the storage bank to the University of Texas MD Anderson Children’s Cancer Hospital, where Little Dude’s physician was recently appointed as the Division Head and Department Chair of Pediatrics.

It may sound strange to use the word excited, but we ARE excited to donate the cord blood, knowing it could possibly help find better treatments and cures for childhood cancer. And, it feels good to know that storing that blood for the past 13 years may have been worth every cent after all.

{ 8 comments… read them below or add one }

Julie January 25, 2017 at 2:26 pm

Scientific discovery IS exciting, and I am happy you have an opportunity to contribute! Such a fascinating topic.
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ohboymom January 25, 2017 at 4:41 pm

Thanks Julie – and yes, my hope is that this donation will make a difference for families who may be facing this type of diagnosis in the future.

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Julia Steinmetz January 25, 2017 at 6:58 pm

Fascinating! And you are doing a good deed. I hope the stem cell donation will help unlock discoveries that help treat and cure this type of childhood cancer. Yes, worth every penny indeed!
xo

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ohboymom January 26, 2017 at 10:46 am

Thanks Julia and yes, I agree!

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Janine Huldie January 26, 2017 at 7:06 am

I seriously love that you are donating his cord blood for this reason and agree that this is so very exciting to see if it can help in finding a cure for the type of cancer Little Dude had or even more generalized types of cancer. Thank you for sharing this and definitely gives me hope just to learn more about this here.
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ohboymom January 26, 2017 at 10:46 am

Thanks Janine and yes, I agree — gives me hope that one day soon there will be cures for pediatric and all cancers…

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Christine Carter January 28, 2017 at 9:13 pm

Oh friend! That is SO exciting and such an incredible contribution to medical research! Wow. I’m SO glad you thought to look into this and use your sweet Little Dude’s cord blood for GOOD. What a GIFT you have given- ALL of us and our children, and our children’s children!

I’m so glad you shared this story. It really opens up my eyes to what cord blood can do and oh, how I wish we saved our kids’ now.
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ohboymom January 29, 2017 at 6:46 pm

Thanks so much Chris – I do hope this donation can make a difference. And, you should not AT ALL feel any regret for not storing your own kids’ cord blood. Most members of the medical community would prefer that parents donate the cord blood to public banks, rather than privately store it like we did, because again, the chances of a family needing and using their own children’s cord blood is very, very remote…which thankfully is a good thing…

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