Newsletter - December 2013

CORD:USE
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Cord Blood as a plot element in the novel,
The Laws of Gravity

Liz Rosenberg

Liz Rosenberg, novelist

I did not set out to write a novel about cord blood. I stumbled upon the idea in an unlikely place - a book club, where I'd been invited to speak about my first novel, HOME REPAIR. I mentioned that I'd been thinking about my second novel, a much darker novel than the first one, more complicated. In fact, I told the group, I'd been thinking about it for 30 years. But I was stuck on a plot point.

Thirty years earlier, I'd read a newspaper account about two cousins who went to court over a bone marrow transplant. The first cousin had leukemia. The second cousin initially agreed to donate the bone marrow - then he got scared off and changed his mind. The case ended up in the Supreme Court of Pennsylvania. I read about it in the newspaper only after the sick cousin had died.

That story stayed with me. What, I wondered, happened between the widow of the first cousin and that second cousin? How did the rest of the family line up? What would happen at family reunions? The story line raised issues of medical ethics; of the bonds of family; of morality vs. law.

But while I was just starting to think about these issues, Jodi Picoult wrote a novel called MY SISTER’S KEEPER. Well, I thought, that was the end of that. Her novel also involved medical ethics, family loyalties, court cases. But the idea for what became THE LAWS OF GRAVITY kept nagging at me. And that day, when I met with the book club group, I spoke about my dilemma.

"Why don't you write about cord blood?" my hostess suggested. She began talking about how one of her own relatives had banked cord blood for her children. We talked about issues of public access to medical miracles. We wondered if cord blood should be banked for every child, regardless of income. We talked about what it might feel like to be asked to give that cord blood to someone else.

A novelist is always looking for ways to put more pressure on their characters. Novels, basically, are about what we human beings do under pressure. I changed several things from the original story I'd heard - I created one female cousin and one male, and gave the male cousin — the one holding the cord blood — more money, and a slight but lifelong crush on the female cousin. Then I had that male cousin, - a nervous, over-protective fellow to begin with — reason to worry about the health of his own children, the ones for whom he'd banked the cord blood. The struggle was no longer about one cousin afraid to get a medical procedure — it became a novel about having to make hard choices, about the hierarchy of family loyalties. On one hand, a dying woman. On the other, a man who just wants to protect his own children as well as to help the cousin he's always loved.

The result was THE LAWS OF GRAVITY, which was published this year by Amazon Publishing. It has had more recognition and success than I would have dreamed possible — it's been a best-seller in the United States, the U.K., and Canada. Looking back at it now, there are things I would change. (Every novelist casts a critical eye on her literary children.) I wish, for instance, that I'd written more about the issue of access to medical marvels. I only touch on that in one scene of the novel, where the wealthy cousin chastises the sick one for not having banked the cord blood of her own child. I had to fudge some technical details about cord blood to make my plot work — a more forgivable flaw. But THE LAWS OF GRAVITY is still very dear to my heart. It sounds silly to say so, but I can't read it myself without starting to worry all over again about my characters — what will they do, what decisions will they make; how will they treat one another; what will the judge do when the case comes to his court.

It's not really a novel about cord blood, of course - it's a novel about family and obligation, about responsibility and ethics and love and friendship and loyalty. The idea of banking cord blood plays a small part in THE LAWS OF GRAVITY. Small, but very significant. And I owe it all to reading newspapers, and going to book club meetings.

Liz Rosenberg is the author of two adult novels, THE LAWS OF GRAVITY and HOME REPAIR. She has also published many other prize-winning works of poetry, children's books, and non-fiction. She is currently at work on her third novel, due out in 2015. She lives and works in upstate NY.

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Charity Profile: Cords4LifeUK

Charlie Harris - Beard

Cords4LifeUK was founded in memory of a British toddler named Charlie Harris - Beard. In April 2011 at the age of 11 months, Charlie was diagnosed with Acute Myeloid Leukaemia (AML), and within the next four months he went through four intensive cycles of chemotherapy to suppress his blood cancer. But AML cannot be cured without a stem cell transplant, and unless he could find a matching donor, Charlie was given only three months to live.

A Facebook page (Help Save Baby Charlie Harris - Beard) was created in order to appeal to the general public to come forward and register to be a bone marrow donor, not only to help Charlie but to help thousands of others that find themselves fighting leukaemia and other cancers requiring a stem cell transplant.

Charlie soon found his match and his life-saving transplant went ahead in Oct. 2011. By the time he recovered, Charlie had spent about 10 months living in Birmingham Childrens' Hospital. Finally in early 2012 Charlie was able to go home and enjoy normal family life once again.

Charlie's second chance of life from a stem cell transplant was wasn't down to an adult donor, but thanks to someone in the USA for donating their umbilical cord blood following the birth of their baby girl. The Anthony Nolan trust found Charlie's donor, thanks to agreements between cord blood banks around the world to list cord blood donations on international registries. Without this agreement in place, Charlie may never have got the stem cells he so desperately needed.

While there have been many cases in which various forms of leukaemia have been permanently cured with cord blood, this wasn't to be for Charlie. He relapsed in September of 2012. Doctors were quick to readmit him to the hospital for more chemotherapy, to try to hold back his leukaemia and schedule another stem cell transplant. But Charlie's leukaemia kept growing, and once again he was given weeks to live.

Charlie with mum Fiona and dad Joe

Charlie's parents Fiona and Joe got married on the 17th of Nov. 2012, with Charlie as their best man and their older daughter Ellie-Louise as a bridesmaid. Charlie stole the show, coming down the aisle with the wedding rings in a remote control model car. The poignant story received international coverage in the press.

Meanwhile, Charlie's family and friends refused to give up on him and kept searching for a therapy that might help him. In Dec. 2012 Charlie was accepted for a trial of an experimental anti-cancer drug, and in Jan. 2013 he began preparation for the treatment. A few days later Charlie developed pneumonia and was moved to an intensive care unit, where he stayed until his life drew to a close on February 8th 2013. Hundreds gathered for his funeral at the same Church where his parents had recently wed.

Cords4LifeUK was started to raise more awareness of umbilical cord blood donations in the UK:

Cords4LifeUK 800,000 babies are born in Great Britain every year, that's enough to fill Wembley Stadium 3 times over!! Now just think if every one of those women had donated their cords there would be some serious amounts of miracles taking place.
Cords4LifeUK 80% of UK transplant requests would be met if we saved 50,000 units of cord blood. Regardless of this fact, last year 65,000 units were thrown away by the NHS.
Cords4LifeUK On average, every year 1 in 100 cord units will be used for transplantation compared to 1 in 1000 registered adult donors.

Cords4LifeUK, aka #charliesarmy, has over 53 thousand followers on Facebook and almost 6 thousand on Twitter.They are working with the UK's Anthony Nolan trust to raise awareness and funding for cord blood donation and cord blood research throughout the UK. Cords4LifeUK also seeks to support families that are affected by childhood cancer, to ensure that no family has to unnecessarily go through what they have experienced.

Cords4LifeUK You can donate to support the work of Cords4LifeUK (Registered Charity No. 1151406) through their profile on MyDonate or via Giving Online.

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Why Parents Need A Guide To Cord Blood

Cara Paiuk and twin girls

Cara Paiuk

It's hard for me to remember exactly what was going on inside my head almost four years ago when I first saw an advertisement for cord blood banking. That was three children and a lifetime ago. I was a different person. I wasn't a mother yet. I had never nursed, budgeted for child care, disciplined a child of my own, bought kid's apps for my iPhone, or gone days (Weeks? Months? Years?) without a good night's rest. Nevertheless, cord blood banking advertising is designed to elicit a visceral reaction in parents-to-be, and it still has that effect on me now — even after all the time and effort I have invested in educating myself on the subject. People are irrational and emotional, especially when dealing with fear, money, or children. Cord blood banking involves all three of these!

Fear is a powerful, overriding emotion. When a cord blood ad presents us with the risk that our child could contract a life-threatening disease, it's practically impossible to be calm and level-headed about it. To a corporation, money might be just a number, but to a person it represents so much more: livelihood, self-worth, survival. When a cord blood company asks us to invest several thousand dollars over the next few decades on cord blood banking, we don't know how to balance the costs versus benefits. Children are our greatest joy and our biggest frustration, and they embody our hope for the future as well as our fear of it. When cord blood advertising shows us images of children saved by cord blood, we are reminded of the tremendous responsibility we have for our children's welfare. How can I afford NOT to bank cord blood, the voice in my head asked. Wouldn't I regret not banking and needing it later, rather than the reverse?

I was able to step back from my emotions and put them into context through tireless research on cord blood banking. But we can't expect every parent to dedicate as much time and effort as I did to making this one decision, when there are countless other choices that must be made as your baby's due date beckons. I am sincerely grateful for Parent's Guide to Cord Blood for providing an unbiased source of information to expectant parents, and I sincerely hope that with the private industry's support, this valuable resource continues to expand its reach and help even more parents make this important decision in the future.


Parent's Guide to Cord Blood Foundation is recognized by the United States IRS as a 501(c)(3) charity.
All donations are 100% tax-deductible on United States tax returns.



Cara Paiuk is an author whose articles have appeared in NY Times, Huffington Post, Kveller, CT-Moms, and others listed at www.carapaiuk.com. She is also an entrepreneur running the company Nutty Cow Inc. as well as a family photographer. She lives in West Hartford, CT, with her husband, toddler son, and newborn twin daughters.