Vetoing Henry

By Laurie Strongin

July 23, 2006 - It was meant to be uplifting: President Bush, surrounded by children who had been "adopted" as embryos, vetoing a bill to permit federally funded human embryonic stem cell research. The children were meant to be props, reminders of the lives his veto would supposedly save. But all I could think about were the children who will be lost because of the politics being played by the White House and on Capitol Hill.

I know, because that's what happened to my son.

On Oct. 25, 1995, I gave birth to my first child, a boy my husband and I named Henry. Two weeks later, doctors determined that he had a rare genetic disease called Fanconi anemia (FA). When Henry was born, there were approximately 1,000 people with FA worldwide, and I didn't know a single one of them. I'd never even heard of the disease. But my husband and I were unknowing carriers of the gene that causes it. And so we passed FA on to Henry along with brown hair, brown eyes and dimples.

Over the next seven years, I learned almost everything about FA, and none of it was good -- especially the impossible-to-accept word associated with it: fatal. Our only hope lay on the frontiers of science, in human embryo and stem cell research. That's where our desperate quest for a cure took us, even as distant policymakers placed emotionally devastating stumbling blocks in our path, obstacles that I believe may well have cost Henry his life.

In almost all cases, FA leads to aplastic anemia, in which the bone marrow does not produce enough red cells, white cells or platelets. This inhibits the body's ability to fight infection, causes spontaneous bleeding and exhaustion and leads to death. The most successful treatment is a stem cell transplant, commonly known as a bone marrow transplant.

In 1995, Fanconi transplant survival rates were dismal. No one with Henry's type of FA had ever survived a transplant unless the donor was a sibling. For Henry to live long enough to reach kindergarten, we would have to have a baby who did not inherit FA and was a perfect stem cell donor for him. With each pregnancy we would have an 18 percent chance of hitting those odds. It was a long shot.

From the moment of Henry's diagnosis, my husband and I believed that if we made every call, pulled every string and pushed love and science to their outer limits, Henry would escape his fate. We searched for someone in the medical world who, like us, was unwilling to accept Henry's death sentence without a fight.

Our search led us to Mark Hughes, then chief of reproductive and prenatal genetics at the National Institutes of Health. He had figured out a way to combine in vitro fertilization with genetic testing before an embryo is implanted. This procedure, preimplantation genetic diagnosis (PGD), involves extracting and testing a single cell from an eight-cell embryo. The results could allow us to know at the moment of conception that our next baby would avoid FA and be an ideal stem cell donor for Henry.

By collecting this healthy baby's umbilical cord blood -- which is typically discarded -- at birth and transplanting the stem cells into Henry, we could save him. Hughes had used PGD to screen embryos for fatal childhood diseases such as cystic fibrosis. But neither he nor anyone else had ever used PGD to save the life of a child already born.

When we began quietly pursuing PGD a decade ago, it was not on the national news or featured in fertility clinic advertisements. It was somewhere between a hope and a dream shared by a small group of doctors and families. But on Jan. 9, 1997, an article in The Washington Post reported that Hughes was violating a two-year-old federal ban on human embryo research with his work on PGD.

Under the ban, Hughes was barred from performing that work as part of his position at NIH. Refusing to abandon his research or the families who were depending on it, he set up a lab as part of an in vitro fertility program at a private hospital across the street in Bethesda. But he was considered in violation of the federal law because his work at the hospital employed NIH research fellows and used NIH equipment -- a refrigerator.

Over the following weeks, the daily headlines all read the same to me: Henry is going to die. As our doctor was forced to resign from his job and faced congressional hearings, Henry's blood counts declined. We searched for alternatives to PGD, but none existed. The politically triggered delay had stolen precious time in our race to save Henry's life. On Dec. 11, 2002, he died in my arms.

There were nearly 100 embryos left over from our PGD attempts. Many had Fanconi anemia. All were precious. After we unsuccessfully attempted to use a number of them to have another baby, it became clear to us that they are not potential life, but lifesavers. So we signed consent forms donating our remaining embryos to be used in research that would provide hope and answers for other couples.

Hospitals are filled with children whose lives depend on medical advances that hold the promise of stalling or even reversing fatal disease. During last week's ceremony in the White House East Room, Bush justified his veto by saying that the bill "would support the taking of innocent human life." But the East Room isn't big enough for all the additional innocent lives that will be lost as a result of his decision.

lstrongin@starpower.net

Laurie Strongin is the founder of the Hope for Henry Foundation.