Cord blood preservation
An umbilical cord blood collection on June 4, 2000 might change my son’s life on June 4, 2025. Jack, my youngest child, will turn 25 years-old on that day. I could have chosen any day in the future. That day seems to offer a reasonably good chance that stem cell research will provide an intervention for type 1 diabetes, a disease with which my son was diagnosed on August 15, 2009.
I had not heard of cord blood in 2000. Jack’s umbilical cord blood was discarded shortly after his birth. It took thirteen years to fully comprehend the waste. His pediatrician, upon triple-checking Jack’s blood glucose level — over 500 mg/dl — sat me down and offered the useless comfort that “at least Jack doesn’t have cancer or a traumatic brain injury.”
Diabetes, he said, is treatable and the prognosis was quite good. Of course, Jack’s physician was right, but that was little consolation considering the fact that a child’s skinned knee can cause much greater pain for the parent than the child. With no cure for type 1 diabetes, I decided on the two next best things — diligence and hope.
In July 2011, I was introduced to the power of preserving umbilical cord blood and the possibility that stem cells may provide help for millions of people suffering from many debilitating health problems including Cerebral Palsy, traumatic brain injury, heart disease, Multiple Sclerosis, Rheumatoid Arthritis, Lupus, stroke, spinal cord injury, Parkinson’s Disease, Alzheimer’s, multiple cancers and, yes, diabetes.
The introduction took place during a short meeting in Center City Philadelphia with an understated friendly man named Matt. The sun was scorching that day and the walk back to my train for the ride home included a sweat-soaked business suit, a few tears and bittersweet confusion.
While cord blood’s effect on any of the diseases I’ve listed may be years away -- or may never come at all -- I’m confident that interventions and, in some cases, cures, will be found. For me, the question of harnessing stem cells to treat disease is no longer a question of if, but when. Personally, I plan to do whatever I have to do to make this happen because, well, I can empathize with any parent who is asked by his child’s pediatrician to sit down and listen carefully.
Over the next twenty years, if I have my way, every newborn’s parents will ensure their obstetrician collects cord blood. Better yet, I’d like to see parents choose to save their child’s cord blood within days of learning they are pregnant. First things first, though.
The first thing discussed -- always -- when preserving cord blood with an expecting parent or grandparent, is the issue of cost. It’s the single most important factor in a parent’s decision to save cord blood. In fact, cost is of such paramount consideration that I don’t know what a second objection would be. As a matter of routine, I hear physicians tell mothers-to-be that, if the mother can afford to save cord blood, it should be saved.
Sticker shock, like that associated with a luxury car or an expensive home, keeps people from choosing to save. When I engage parents and physicians in a dialogue about the cost of preserving cord blood, its potential value is almost never questioned. It is universally agreed that if the cost to save cord blood were $1, everybody would gladly save. Somewhere between one dollar, and the average two thousand dollar fee required by a world class cord blood company, an expecting parent actually makes the choice about the value of a child’s future. That last sentence sometimes makes me unpopular.
Over the last year, I’ve heard pundits and naysayers accuse cord blood companies of playing on a family’s fears and unnecessarily upsetting expecting parents with doom and gloom. Often, the tears cried by a mother who has chosen not to save cord blood, ostensibly because of cost, are blamed on cord blood company marketing messages. Those tears, in fact, come from the belief that saving cord blood will offer an opportunity to their child, an opportunity they’ve chosen to ignore because it is too expensive. When I challenge parents to define “too expensive”, I’m never given a dollar figure...$462 or $787 or $1,549. Most often, when asked what is “too expensive”, a parent’s response is “I don’t know”.
I want to help parents “know”.
When I ask a family to consider preserving their newborn’s cord blood, I encourage them to look at least ten years into the future — and to do so with hope and wonder — not doom and gloom. Preservation, in my opinion, should not be chosen due to a fear of severe childhood illness. It’s easy to see such odds are long. Instead, I recommend families choose preservation because it may offer their child improved health well beyond a rambunctious childhood, perhaps far into adulthood.
For me, if it cost hundreds of thousands of dollars — comparable to the cost of a new home — to retrieve the lost opportunities cord blood may have offered Jack, I’d find a way.
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