Sunday, April 1, 2012

The one about stem cells

This is one of two posts to help you make up your mind whether to bank the stem cells found in your baby’s umbilical cord blood, or not. I’m not going to tell you yes or no, I’m simply sharing our story (in this, post #1) and then on Tuesday morning I’ll share the answers to some tricky questions I had the opportunity to ask the specialists at stem cell bank Cryo-Save (in post #2).

You’re probably wondering if we kept the Lionheart’s cord blood. We didn’t. Not for lack of information – we knew all about umbilical stem cells – but it was way out of our price range, and of course, we were still tucked snugly in our “it couldn’t happen to me” cocoons.

But it happened: Travis was born with a brain malformation. And his condition does stand to benefit from stem cell treatment. In China, there is a facility that is treating children with Septo Optic Dysplasia with infusions of umbilical stem cells. It costs around R650 000 for us to fly there, and live in China for a whole month while Travis has four to five treatments done.

That’s right – there is a chance we could improve the Lionheart’s quality of life... So why haven’t we done it? It’ll try to untangle our knot of reasons for you as succinctly as possible.

It’s not for lack of stem cells: Chinese moms donate their newborn’s umbilical cords to science. Despite the difference in ethnicity, you still have a fair chance of finding a genetic match simply because of the sheer size of the pool of banked stem cells at the disposal of the Chinese scientists. (It would be harder to find a match, say, if Travis was a mixed race child.)

It’s not for lack of money: While my husband and I are of humble means, we are fortunate in that our boys have grandparents who have worked hard and achieved the kind of success that would enable them to finance this medical procedure for Travis.

So what’s the problem?

Treating Septo Optic Dysplasia with stem cells is still in the experimental phase.

Although China is forging ahead with trials, the United States (home of the all-powerful rubber stamp of the FDA) is not even ready to test on humans yet. No one knows what the side-effects or complications will be in 10 or 20 years from now – the studies have not been active long enough.

I do know several moms, some from America and one from South Africa, who have flown to China to have the procedure done. They say it works, but none of them can show me, on paper, that their child’s cognitive ability and eyesight have improved. But they have stories aplenty of the great results they’re seeing. This is what we more conservative folk refer to as ‘anecdotal evidence’.

Show me the scientific evidence, and we’ll be on the next plane to Asia. Until then, China and it’s ‘miraculous’ stem cell treatments and its seemingly unlimited supply of genetically compatible umbilical stem cells is off the cards. (Also, Dr Mark Borchert, who is the leading expert in the field of Septo Optic Dysplasia, has advised parents against experimental stem cell treatments.)

For a neurological condition like Trav’s this type of treatment is best done while he is under the age of 10, to take advantage of the rapid cell division and regeneration that we all enjoy during childhood. Sadly, by the time the procedure is approved by the mighty FDA (who set the standard for our South African medical bodies), Travis will be an adult, and the treatment won’t be as effective.

It’s a hard decision to make, but we couldn’t live with the consequences if we willingly let Travis the Lionheart become a lab rat in an experiment that could go wrong. If his life were in danger, we might feel more inclined to take the risk, but his condition is stable.

So we wait. And we hope.

5 comments:

  1. Wow, it's a tough one hey? Do we take a chance? Will that chance be worth it? Do we listen to our gut instinct? Do we err on the side of caution?

    For interest sake, my gut instinct tells me not to go the stem cell route. I also think that you have made the right decision! :)

    Who knows, perhaps in ten years time something even better will come along!

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  2. Difficult one, but I have to say that I would like someone else to experiment and not on my child.

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  3. Thanks Stace. This is obviously written from your perspective about Trav's specific condition. However, there are less severe conditions that can and do benefit from stem cell treatment. In my opinion stem cells should be stored wherever possible. If your child developed cancer, I would far rather have his own cells on tap then spend $250 000 dollars on a worldwide search that could take years: especially when time is of the essence. I think what many don't realise though is that stem cell treatment is not only experimental but also not covered by medical aid. But I do know of people who have had success in treating even minor conditions (one girl had a lip repair done), if your child turns out to be a professional athlete and needs a knee replacement, those stem cells will be invaluable. Having said that i could afford to store with my first and not with my second but felt at least we were covered for a 1/4 of a match? Many would spend more on a laptop but not on stem cells which still appears to be a grudge purchase.

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    1. Thanks, Jenny - you're right of course. Stem cell treatment is currently a 100% approved method for the treatment for several conditions, most of them blood disorders. Currently it is free to search the public stem cells bank of the world (SA doesn't have one), as well as most of the private banks. If you do find a match, it costs between 22 000 Euros and $38 000 dollars to retrieve the stem cells. (Then of course, there's still the doctor and hospital bills on top of that.) I'll cover this and more in my next blog post on stem cells. Like I said, I'm neither for or against banking your baby's stem cells - it's up to the parents, their financial postion, and their family medical histories. There are just too many scenarios to give a blanket 'yes' or 'no'.

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  4. I just have to reply!!! Damn, I didn't put enough thought into my first reply!! If I could have, I would have banked my boys umbilical cords (I don't recall anyone doing that 13+ years ago). I think it is vital to have the option of using stem cell treatment if needed! What I wouldn't do *at this time* is go for stem cell treatment for autism for my son!

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Thanks for sharing, Lionheart readers. ROAR!