While researching my previous post on the pros and cons of banking your baby’s cord blood, I happened upon the stories of two infants whose cerebral palsy seemed to improve after they received an injection of their cord blood stem cells. (Amazing Recovery Attributed to Cord Blood; Girl’s Own Cord Blood Gives Her Parents Hope
The stories were as dramatic as they were heartrending. Each told of almost miraculous improvement following the experimental treatment: the utterance of the first word, more awareness of surroundings, improved muscle strength, and (for me, most touching of all) parents reporting: “He also began to laugh at about a week after the infusion. He never laughed before; he would just kind of screech.”
These stories could not help but fill me with great hope. Could cord blood stem cell injections actually improve a previously ‘incurable’ condition like cerebral palsy? It would literally be a dream come true, especially for a developmental pediatrician like me.
Yet, despite these compelling stories, I still opted not to recommend privately banking your baby’s cord blood. Why not? Shouldn’t these tales seal the deal and mandate, if you can afford it, that you privately bank your baby’s cord blood for a rainy day?
The problem is – as I have learned from long experience – often the most compelling story doesn’t withstand close scrutiny and turns out to be a false lead, a flash-in-the-pan, offering unjustified hope to despondent families or, even worse, a way for true-believer charlatans to make a buck off parents desperate to find a cure for their child.
Let me explain further why in this case I refused to jump on the bandwagon:
- Usually, only positive stories are publicized. Infants for whom the stem cells did nothing don’t make it to the media’s radar screen, so you never read about them. That’s why you always need to ask, when hearing of miraculous cures “How many kids did this not work for?”
- It could have been a coincidence. Yes, it sounds like these two children benefited, but do we really know it was from the stem cells? That can only be proved by scientific studies showing it was due to the injection (and not something else that happened around the same time).
- The “placebo effect” has to be considered. If we think and pray something will help, we tend to interpret what happens in a positive light. Believing is seeing. That’s why the improvement needs to be documented, not just by hopeful parents, but by objective observers who may not even know if the child received the treatment or not.
- The progress, even if real, could be short-lived. Are these children continuing to improve? Have they regressed and lost any of the initial skills? Only studying them over time will tell.
- We need to watch for negative side-effects that only show up later. Sure, we think one’s own stem cells should be trouble-free, but until it is put to the test, we don’t really know. First, do no harm.
So, call me a Grinch, but until there is a published, peer-reviewed, proper scientific study, I’m reserving judgment and not allowing these stories to change my attitudes.
I know this caution drives some parents crazy or even makes them angry with me, but alas, I’m old enough to have been through about 100 “cures” for autism which, despite their compelling stories at the time, never panned out and only led to more heartache and expense.
From where I sit, it is an egregious sin to offer families false hope that is cruelly dashed over time, rather than impatiently but prudently waiting for the scientific evidence to come in.