Did cord blood banking save this baby from brain damage?

barbara

Pioneer Founding member
Many researcher's claim fear of the unknown, but this may be dooming millions of patients who could lose the window of opportunity to change the course of their disease or condition. This child was lucky because she was able to be treated, but how many others could possibly be helped who are denied use of their own stem cells? Researchers rail on about unproven therapies, but Dr. Kurtzberg's treatment was certainly unproven. Why is it different just because she happens to work at Duke?

Dr. Kurtzberg has been swift to criticize offshore treatments, but should parents of children like Bailey (or any patient with any condition for that matter) simple do nothing and lose their chances for improvement if they cannot get treated in the U.S.? Where is the proof that Dr. Kurtzberg's treatment is safer or has more efficacy than a treatment given elsewhere? The stem cell industry is too full of conflicts and special interests and it is costing lives.



By Amanda WoernerPublished January 13, 2014FoxNews.com

http://www.foxnews.com/health/2014/01/13/did-cord-blood-banking-save-this-baby-from-brain-damage/

It started as a small ‘hiccup-like’ movement.

Rebecca Coates had given birth to her daughter Bailey only hours earlier when she noticed something was not quite right with her infant.

“She was moving really strangely, even under the swaddle, so I called the nurse just to make sure she was breathing okay,” Coates told FoxNews.com.

Bailey was given the ‘all clear’ by the hospital’s staff – but the ‘hiccup-like’ movements didn’t stop. So after Bailey was discharged, Coates rushed her to a pediatric neurology consultation.

“They scheduled her for an MRI, and that’s when we found out she had had a stroke” Coates said.

Doctors believe Bailey suffered a stroke in utero after a piece of placenta detached and traveled through her umbilical cord into her brain. And those strange movements Coates had noticed had actually been seizures.

Initial visits to neurologists yielded scary predictions for the Coates family. Bailey’s stroke occurred in the left side of her brain, and as a result, her ability to move her right arm and part of her right leg had been compromised. One doctor predicted that 25 percent of Bailey’s brain had been affected and that she may never walk or talk without intensive therapy.

“I remember lying in bed and thinking, ‘She only rubs her eyes with her non-affected side,’ and I remember staying up at night and watching her do that and being so scared,” Coates said.

Cord blood banking
When Bailey was born, Coates and her husband Bob had decided to bank Bailey’s cord blood through Stemcyte, a private cord blood bank. Found in a baby’s umbilical cord, cord blood contains hematopoietic progenitor cells, a type of stem cell that has been used to treat leukemia and lymphoma. The Coates family had also heard that cord blood was being used in research for Alzheimer’s disease – a condition that ran in their family – and they figured the banked blood may be useful someday.

“To be honest, it’s cheaper than my television, so of course I’m going to invest that way in my child’s future,” Coates said. “I never in a million years thought we were actually going to use it.”

Though Bailey was immediately enrolled in physical therapy programs, Coates began researching other options as well – keeping in mind the cord blood she had banked upon Bailey’s birth. Eventually, she wandered across a clinical trial run by Dr. Joanne Kurtzberg, the director of the pediatric blood and marrow transplant program at Duke University.

For the past 25 years, Kurtzberg’s pediatric transplant program has pioneered work using umbilical cord blood as a way to treat diseases and injuries affecting the brain. After previous research had indicated success treating children with genetic brain diseases using donor cord blood, Kurtzberg’s new trial was exploring whether or not children with certain brain-damaging conditions could benefit from being treated with infusions of their own cord blood.

Though Bailey was not eligible for the already-in-progress trial, Coates called Duke anyway, and the program agreed to allow Bailey to receive the treatments as part of their compassionate care program.

“When we first heard about her history, which was that she had seizures as a neonate and showed a scan that showed stroke, we felt she was clinically a good candidate. And on top of that, they had banked her cord blood with a private bank,” Kurtzberg told FoxNews.com.

Treating Bailey
Soon after being chosen for the program, Bailey began receiving infusions of her own cord blood at Duke. The process involves a 15-minute intravenous infusion of cord blood cells, followed by two hours of IV fluids and a three-day stay in Durham to monitor for allergic reactions. Furthermore, the procedure is considered very safe – particularly when a child’s own cord blood is used.

Kurtbzberg said they believe the cord blood cells help initiate signaling that decreases inflammation around the area of the brain affected by stroke. This ultimately attracts neural stem cells already in the brain to start repairing the injured areas.

“They also give out signals that promote angiogenesis – blood vessel formation – and when that happens, it promotes repair of the injury and promotes, in the case of stroke, revascularization – or new blood flow to the areas otherwise damaged,” Kurtzberg said. “Both those things end up causing new connections between neurons, the nerve cells, and those new circuits are what’s responsible for restoration of function that would otherwise be damaged.”

Now 14-months-old, Bailey has had three transfusions so far, and Coates said she appears to be responding well to treatments. She now has use of both sides of her body, and she is learning to walk and talk as well – hitting all the milestones expected of normal, healthy children her age.

“She is completely age appropriate. The only thing I’ve noticed is she has some hand preference, but that could be just because she’s going to be left-handed…,” Coates said. “Two-handed activities she does with no problem; she can hold a cup; she can point with her finger. Typically a child with cerebral palsy, which she was at risk for, would have a fisted hand and wouldn’t be able to open and close or grasp objects and point.”

Kurtzberg said Bailey’s progress has been encouraging – though they can’t definitively know whether it was the cord blood infusions or other factors that have contributed to Bailey’s progress.

“Bailey has done well. She is developing with more function than you might have predicted based on what her brain scans showed,” Kurtzberg said. “Her parents have done a really great job with her in terms of not only getting cord blood infusions but also pursing every sort of early intervention and therapy possible.”

Dr. Charles Law, the medical director at United Cerebral Palsy of Greater Birmingham, saw Bailey both before and after she began cord blood infusions and said the degree of function she has is remarkable – considering the amount of brain damage she incurred as a result of her stroke.

“I think that’s the best part of the story, when you look at her MRI you expect a dense hemi-paresis, I expect her to have very limited use of her right side,” Lawson said. “But the opposite is true, if I wasn’t looking for it I probably wouldn’t even notice anything is wrong with her. In my mind, that’s the great part of the story. Her MRI does not fit her clinical picture.”

Though more research needs to be done before Bailey’s progress can be directly attributed to her cord blood infusions, the Coates family, Kurtzberg and Law all hope Bailey’s story will help spread the word about the potential benefits associated with banking a child’s cord blood.

“If we know this works, we need to enable early diagnoses and collection of cord blood, not because a family chooses to do it and can afford it, (but) because it’s the right thing to do medically and we have to figure how to deal with the cost of that,” Kurzberg said.
 

LLL6521

Member
I actually talked to her on the phone when I first started to investigate SCT's for Lawrence. This was 5 years ago. She totally discouraged me on any treatment, because it was not proven to work at the time. First, because Lawrence did not have his cord blood banked, so he was immediately disqualified. Keep in mind, Lawrence was born 8 years ago, and cord blood banking was not as well known as today. I was ignorant at the time about the industry and SCT's in general, I asked the most sacrilegious question of all too Kutzberger, "What about the option of treating my child overseas, because it seems he does not have any options here?" Here response, "You are putting your child at risk and potentially at risk of his own life with these unproven clinics. I totally advice you against it." I gave up for while, but continued to investigate and found Barbara’s Stem Cell Pioneers website. From there, I became more educated and found stories from other patients. After a while, I communicated with her a year later, and asked her a question via email, “Do you have any published works in the dangers or hazards of autologous stem cell treatments?” Unfortunately, she never responded. Maybe because there was no evidence at all. She kept that narrative all along, even with the 60 Minutes piece 2 or 3 years ago called "Snake Oil." Now in this report, it seems to be okay and have thumbs up on cord blood stem cell treatments. Meanwhile after years waiting, my son could have had the same treatment as a medical procedure, and things could have been totally different for him. The coalitions of researhers and universities that advocate in favor of the FDA's decision to regulate stem cells have a hand in Lawrence’s progress being stifled. It breaks my heart when I read the Fox article. Then again, this applies to all of you waiting in the sidelines as well. Albert Salazar (Father of Lawrence Salazar)
 

pink7

New member
Cord blood banking and brain damage

I absolutely agree with you. It is snake oil if done overseas.It is the same story here in Australia.
 

LLL6521

Member
Hi Pink7,

There are many overseas clinics that are legit. It is just highly advised to research any place that is considered. As for reversing the brain damage, I don’t think we are there yet. The child is too young to evaluate. It is at age 3 and over when they can properly evaluate the child's prognosis. It is then they can reach a better conclusion. As much as the overseas clinics are reprimanded for making such claims of curing, researchers should also be held at the same scrutiny. I don't Dr. Kutzberg is making that claim. However, researchers and medical doctors have different protocols in their research methods. Since, the FDA deemed autologous stem cells (from your own body) as a drug, it is treated and researched as a chemical drug similar to the assumption that it must be proven safe with a guilty first assumption. Patientforstemcells.org argue that this is a unique treatment that should be considered as a medical procedure and not under the guilty first chemical drug assumption that is massively produced for the public. In short, we are fighting for the rights to our own stem cells. We have too many patients suffering and dying on the sidelines waiting for this revolutionary medical procedure.
 
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barbara

Pioneer Founding member
Pink7, correct me if I am wrong, but I think you were being facetious when you said, "It is snake oil if done overseas."
 

pink7

New member
Cord blood banking and brain damage

Yes Barbara that was my meaning. Thanks for clarifying my views.
 

barbara

Pioneer Founding member
Here's what Pink7 is talking about. The ISSCR global stem cell police are here to tell us what's good for us no matter where we live. Unfortunately, most do not realize that the ISSCR is not an independent group by any means, bereft of any conflicts of interest. The group is extremely conflicted! This article smells like a press release disguised as a real bit of news. I love how they are urging people to report naughty doctors. The usual scary words are used - unproven, so-called, untested.

These same treatments are perfectly okay however if done in a clinical trial that suits the ISSCR even though they are still unproven and untested. Does this make sense to anyone? As I've said before, it's all about power, profits and politics.



Stem cell treatments on the agenda
By Susan Williamson | Posted in Cell biology on 17 January, 2014

- See more at: http://lifescientist.com.au/content/life-sciences/news/stem-cell-treatments-on-the-agenda-1093149290#sthash.0rvXWorI.dpuf

The increasing availability of unproven stem cell therapies is beginning to be addressed with the NHMRC releasing new resources to help people navigate this complex area.

Stem cell research offers great potential to treat and repair numerous injuries and diseases. However, treatments are often reported to be more advanced that they actually are; that is, there is a lack of scientific evidence along with a lack of appropriate safety evaluations.

The regulation of cellular therapies in Australia by the Therapeutic Goods Association (TGA) is generally pretty good. But a loophole exists that allows clinics to offer people treatment using their own cells - so-called autologous therapy.

Because autologous therapy is exempt from TGA regulation, clinics can offer people unproven and untested stem cell treatments - many of which are crude or poorly characterised tissue extracts that can cost thousands of dollars.

Late last year, the NHMRC released the new resources - Stem Cell Treatments - A Quick Guide for Medical Practitioners and Stem Cell Treatments: Frequently Asked Questions - for Australian medical practitioners and patients contemplating using stem cell-based treatment.
The documents are designed to raise awareness, support people in making informed choices about treatment options and facilitate discussions between patients and their medical practitioner. They also raise awareness about doctors in Australia selling experimental treatments using a person’s own cells and encourage those who have concerns to report medical practitioners to the Australian Health Practitioners Regulatory Agency, Australian Competition and Consumer Commission or their relevant state or territory fair trading agencies.

Proven stem cell treatments that have undergone the rigorous approval process are currently limited to certain cancers, blood and autoimmune diseases, burns and repair of the cornea of the eye. All other treatments are experimental or entering clinical trials and yet to be demonstrated as safe and effective.

The International Society for Stem Cell Research released a statement last year supporting the need for regulatory oversight of this global issue.
For more information see The Australian Stem Cell Handbook, which the NHMRC documents draw on, published by the National Stem Cell Foundation of Australia and Stem Cells Australia.

- See more at: http://lifescientist.com.au/content/life-sciences/news/stem-cell-treatments-on-the-agenda-1093149290#sthash.0rvXWorI.dpuf
 
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