Dear Henry

In England, where Aunt Abby, Uncle Andy, Michael, Rachel, Josh and Noah are moving this fall, they are passing laws to make it okay for parents to help save the lives of kids who, like you, can be saved by having a matched sibling transplant.

There are some people who don't want to let parents and doctors do this. The article that I posted the other day from the English newspaper was written because there is controversy about the laws. The mom in the article, Donna, said that no-one over there stepped up to help her and her son Jamie with FA the way Dr. Hughes tried to help us with you, and the way Dr. Verlinsky saved Molly. She then had a baby "the old-fashioned" way and it wasn't a match for Jamie. Understandably she was bummed the baby, Donatella, wasn't a match - but it doesn't mean she is any less loved.

We always wanted to have 3 kids, partly because that is how many kids were in Mom's family and they were really happy growing up. We were going to have more babies after you were born. Having Jack or Joe save your life would have been amazing. We don't love them any less because they couldn't. It is not an issue. Not even on the radar. The blame that parents carry around is for themselves. There is always something you wish you could have done.

I get so tired of the "spare parts" baby thing. Reporters who use it are lazy, and politicians and other people who use it are demagogues. I'll tell you later what a "demagogue" is. That is a high school vocabulary word. People have babies for so many reasons... in the old days people had a lot of kids to help work in the fields, to carry on the family name or to take care of them when they got old. Nowadays some might have a baby to save a failing marriage or because of status. So who is to judge.

The other day I got an email from Jillian Moreno's dad. His job is to think, teach and write about medical ethics and stuff like using pre-implantation genetic diagnosis to identify a potential matched sibling donor. He submitted a letter to the editor of the Washington Post responding to a crazy thing that someone wrote in the paper.

Human-Animal Hybrids and Other Neoconservative Nightmares
Jonathan D. Moreno

My daughter’s schoolmate, Henry Goldberg, died when he was seven years old. Henry was born with Fanconi Anemia. Hoping to save his life with a transplant of healthy, compatible cells, his parents attempted another pregnancy. The placenta that nourished that baby could be used to save Henry’s life. Sadly, Henry never did have a sibling with the needed blood type. Beloved to his friends, Henry was an invariably cheerful little boy. I will never forget the moment in our kitchen in December 2002 when my daughter got a call telling her that Henry was gone.

To help save future Henry’s, in vitro fertilization techniques could make it more likely that a baby with a compatible blood type will be born, by selecting only certain embryos for implantation. Opponents claim that this approach undermines human dignity, yet Henry’s little brother is treasured, and they do not explain how Henry Goldberg’s death enhanced human dignity.

This issue is part of a bill before parliament in London that has turned the usually sensible British system of fertility science into a political crisis for the Brown government. Among other provisions, the bill would permit the preimplantation genetic diagnosis in IVF clinics that could provide “savior siblings” with compatible blood types for children like Henry who have life-threatening conditions.

The law would also formalize a practice that is already permissible in Britain, creating embryos that mix human and animal material for medical science. Human DNA is put into cow eggs with the nucleus removed so that research can be conducted on diseases like Alzheimer’s and Parkinson’s. Animal eggs are used because human eggs are so difficult to obtain. Although critics like to call the products of these mixtures hybrids, conjuring up images of centaurs, the only non-human genetic material left in the embryo is the one percent that is outside the nucleus. The resulting embryos would not be allowed to develop beyond 14 days. Mixing human and animal genetic material is not new in medical science. Among other achievements, it made possible the mapping of the human genome.

These life and death matters don’t fit on a bumper sticker. So the casual reader could be forgiven for being startled by a passage in Michael Gerson’s Washington Post column about British politics last week (“Tories Who Can Teach McCain,” March 28, 2008), when he mentioned legislation “that would allow the moral monstrosity of animal-human hybrids, as well as the creation of ‘savior siblings’ who would have their genetic material harvested for ill children.” Those not sufficiently horrified by these loaded descriptions were immediately aided by Gerson’s assertion that “in Britain, the slippery slope has become a vertical drop, with a respectable, noncontroversial, scientific barbarism at its bottom.”

How far have our gallant allies fallen that neither the Labour nor the Tory leadership perceives the end of civilization at the end of the path they shall soon tread? Gerson’s account would be comical if it weren’t so distorted and so remarkably synchronized with opposition from Christian conservative groups now pressuring members of Parliament.

At end of the day I am wondering who the monsters are. And, when all has been said, what would we tell Henry?

Jonathan D. Moreno teaches medical ethics and the history and sociology of science at the University of Pennsylvania.

I am not as smart as Jonathan and can't make the argument as well as he can -- but to all those people who don't want to let doctors help parents have babies who will save the lives of their sick kids, I would just ask them to read this article that we got this week in the Fanconi newsletter.





Thank god we live in a country where we at least have the chance. If only we just had a little more time to make it work then, I wouldn't have to be writing these letters now.