Life Line or Pipe Dream?

Parenting involves tough decisions, and here’s one:

Should we bank our son’s cord blood?

Our daughter has a congenital heart defect (Tetralogy of Fallot) and received an open heart surgery repair when she was three months’ old. She’s doing great, but will eventually need a valve. Some recent studies and trials show that it may be possible to grow a transplant valve from stem cells that would grow with the recipient–in fact, researchers have grown a heart valve from bone marrow cells.

At the end, I’ll explain why I hope you’ll consider donating cord blood if you are expecting a baby soon.

But this post is about our decision about whether or not to use a private bank to store our son’s cord blood.

Here’s where it gets complicated.

I was pulling my hair out weighing the options with little information, pouring through academic papers that were way out of my field. Finally, I found this really helpful article about whether or not to bank cord blood, that gave me some more information so I could make up my mind.

Will the technology work?
This, of course, is just speculation. Who knows what they will be using ten or twenty years from now. So, no real answers there. If your child has a disease that is currently treatable with cord blood, you can apply for Sibling Donor Programs that will cover the costs for you. Since this is still experimental for heart valves, our daughter would not qualify–but it is good to know about these programs other parents are able to use.

If they do build a transplant valve, will it be more likely that they will use her bone marrow cells or cells from cord blood?

Hard to say. In many children currently being treated with stem cells, their own cells contain the genetic markers for the disease and is therefore unusable. However, that is not an issue when growing a replacement valve. Therefore, our daughter’s bone marrow would provide an exact genetic match without the issues involved in treating children with other diseases. Also, a single cord blood unit often does not contain enough cells to treat the patient. If my daughter is ultimately treated with cord blood, there is a possibility the surgeons will need multiple units, anyway.

Are we more likely to find a match from her brother’s cord blood or from a public bank?

If we do use cord blood at some point for her, it seems likely we would have to turn to a public bank. Although the chances of finding tissue matches among family is higher than finding tissue matches in a group of strangers, the odds are only 25% that any one sibling is a tissue match. On the other hand, it appears that the numbers game changes the odds. If thousands of samples are available in public banks, the odds are much better that one of these will be a match than the blood banked from one sibling. And, as I mentioned above, many treatments require multiple units anyway.

When will she need it?

We’ve gotten different answers from different doctors. Some say in her early teens, while others believe she will be able to wait until her early 20s. This matters, because we’re not sure about the length of storage possible for cord blood. Some studies suggest it may last up to fifteen years or more…or it may not. So, even assuming we bank her brother’s blood and it is a match and the technology is there and it is enough to grow her a valve, the blood may no longer be usable when we need it.

So, what does this all mean?

To bank privately or not is a hard decision. I would spend any amount of money to give my daughter the best shot at a healthy life. Many patients with valve replacements live long, full lives. At the same time, it seems foolish to throw thousands of dollars at a pipe dream–money that could be spent giving her and her brother other opportunities.

Current transplant valve materials all have issues and all require replacement approximately every 15-20 years. Heart surgery is growing by leaps and bounds, however, and it is entirely possible that a valve grown from stem cells (or made out of another material, like the super-elastic, shape-memory metal alloy called “thin film nitinol”) may be a real option for my daughter.

So, that doesn’t let any of us off the hook!!! Please donate cord blood!

Public banks of cord blood will be the source of stem cells for many potentially life-saving treatments for leukemia, lymphoma, sickle-cell anemia, immune deficiency diseases, aplastic anemia, thalassemia and probably more in the future. If you give birth at a qualifying hospital, without any charge you can donate cord blood, which contains stem cells that may save a child’s life.
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5 comments

  1. Judy says:

    I think it’s great that you are researching the options so carefully. I was looking into banking our son’s cord blood but found that the military hospital won’t do it. I hadn’t thought of banking our next child’s blood for upcoming surgeries. Our son also has Tetrology of Fallot. I will definitely be more proactive about banking next time. Our docs told us the same general schedule of teens to 20s for a new valve.
    Thanks for the good idea.

  2. Jen says:

    I think this is the most informative post I have read in a long time about cord blood possibilities. We decided early on that we could not afford to privately bank our daughter’s cord blood so offered it up to a company as a donation. I had a deadline to meet to get the kit sent to me, which I easily met. Only drawback? They didn’t send the kit. I called them before I delivered (planned c-section), but it never came. I’m hoping some hospitals are putting kits aside for this option as they may be able to help more people or at least help with research.

  3. Unrelated but, stop by the old blog if you get a chance. You’ve been tagged. 😉

  4. kristina says:

    Excellent post.

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