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A Cure for Infantile Cerebral Palsy?
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:
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.
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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.
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Labels: cerebral palsy, cord blood, stem cells
7 Comments:
Sorry, that story is enough to convince me! If I have antoher child, I would privately bank his cord blood.
A touching story is not proof. I agree with Dr. P. Let's wait and see how this plays out before rushing to judgment.
I say what can you lose if you can afford it? The answer really is nothing, and therefore should be done. At the very least, it can offer the opportunity for an autologous bone marrow transplant. At most it could offer cures for all sorts of things. Therefore, if the money is there, why not?
Oh no. When I was carrying my son, I considered banking his cord blood. I deceided agianst it because the cost seemed to outweigh the benefits. He was born with severe cerebral palsy. He didn't laugh until he was three years old! Guess how I feel now?
We wanted to bank our sons' (twins) cord blood, but an emergency premature C-section precluded that. Now that our surviving son is struggling with CP, I wish there was some way we could have done this as currently, in the US, self donated cord blood is the only legal option for stem cell therapy. Hopefully, the US will soon join the rest of the developed world in researching non-embryonic stem cell therapy instead of pushing parents to Dominican Republic, Mexico, China, India, and Costa Rica for treatment. Folks need to understand that time is critical for a developing child; parents don't want to hear that a treatment with even a slim chance of success may be available for them in 10-15 years, politics notwithstanding. As far as clinical trials, we've been fooled into thinking they are the end all of science. I'd rather have the raw statistics of the good, bad, and ugly, as well as the treatment protocol and make my own informed decision than rely on study results funded by pharmaceutical companies and research doctors with conflicts of interest.
Regarding the cost of banking: My son has CP. We spend $12-$14K annually, out of pocket, for treatment. Additionally, with 20-25 hours per week dedicated to getting him to appointments, my wife cannot work, so there are also lost wages. Consumers should do the math and compare the cost of banking blood for 1-5 years versus treatment/mitigation of possible developmental conditions and (if applicable) the loss of a wage earner to become a primary care giver. While there are no guarantees regarding the use of the banked cord blood, at least you would have that option to try. For those parents who are not anticipating problems, this is a risk tolerance question akin to an insurance decision.
I also had twins, premature (33 weeks) and emergency C-sect. I didn't think we could afford to bank the blood, so I hadn't even tried to arrange it. They were beautiful and healthy boys. But around his second birthday, one of my boys was diagnosed with neuroblastoma, a very aggressive childhood cancer. After a three-year battle, he died a few weeks before his fifth birthday. The cord blood would probably not have changed this, but we will never know. I know several children with leukemia and other cancers who had cord blood transplant from donated blood cells. If it was their own cord blood, the procedure would have had less side effects.
Until you have been put into this world, you have no idea how horrible it is, and how helpless you feel. You will grasp any slim strand of hope, and if we had cord blood, it would have been used at some point. When you run out of treatment options, it is devastating. There is no greater horror than watching your beautiful perfect child's life slowly slip away, while they look at you with those big brown eyes so full of hope and love.
I understand what the doctor is saying. It was some of the same arguments I used before my children were born to justify not trying to save the cord blood. Yes, pediatric cancer is fairly rare, but it is the number one disease killer of children in the US. The cord blood is too valuable to waste, especially if there are other illnesses that can be treated with it. If you cannot save it privately, donate it so others may benefit. Donate it so research may come from it. In a few years, who knows what kind of treatments and benefits they may find if they look. If you have had a child die of an incurable disease, you will understand.
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