Dear Henry

Couple abandons plan for a 'saviour child'

Pamela Fayerman
Tuesday, May 13, 2008

METRO VANCOUVER - A Port Coquitlam couple trying to conceive a "saviour child" to supply stem cells for their son with leukemia have now abandoned the effort because the eight-year-old has relapsed and needs a more urgent - albeit mismatched - transplant.

Time has run out in more ways than one for Pam and Mike Obadia, both aged 47.

The couple made national headlines last month when The Vancouver Sun wrote about their desperate bid to boost the survival odds of their son by trying - against biological odds - to create a test-tube baby.

The baby's umbilical cord blood stem cells would be harvested at the time of birth and transplanted into their ill son, Benjamin.

Since the reproductive technology was not offered in B.C., the couple had planned on going to Chicago.

But during recent testing at B.C. Children's Hospital, the family learned that Benjamin had suffered the second relapse of his five-year battle with leukemia.

Now he's on a more aggressive chemotherapy regime and scheduled to get radiation, then a transplant in July.

Benjamin has been on an international registry for two years, but a matched donor has never been found for his unusual tissue type. So the transplant will consist of stem cells from umbilical cord blood of an anonymous source.

Dr. Geoff Cuvelier, a pediatric oncologist at the hospital who is not involved in the Obadia case, said about 10 such mismatched cord blood transplants are done each year at the hospital. The goal of such transplants is to boost the immune system of the relapsed patient so it can attack the residual cancer cells left in the body that chemotherapy doesn't kill.

Pam Obadia said she has been overwhelmed by the love and support from strangers and friends over what she and her husband had planned on doing.

"Although we have to abandon Pre-Implantation Genetic Diagnosis (PGD) because there isn't enough time to wait, we want everyone to know how much we appreciate their universal support," she said in an interview.

The primary purpose of PGD is to select eggs or embryos that are not affected by serious genetic, inherited diseases. But at some private reproductive technology clinics like the one in Chicago, the process is now also being used to find embryos that are a tissue match for an ailing sibling.

It is not offered at hospitals in B.C. because of cost, and ethical and moral concerns about whether it is right to conceive a child for the sake of another.

At B.C. Children's Hospital, parents of sick children are not informed the procedure exists as an option to pursue elsewhere; the Obadias heard about it from a friend.

The process to create a saviour child starts with in vitro fertilization, in which eggs and sperm are incubated in a laboratory to create several embryos that are then screened to determine which to select for implantation into the mother's uterus.

Pam Obadia's odds of getting pregnant were extremely low because of her age, and she admitted she was grasping for a miracle to save her son.

At last count, Benjamin had endured 311 courses of chemotherapy, 296 needles, 38 spinal taps, 16 blood transfusions and 15 bone marrow biopsies. But Pam said her son remains upbeat, to the point that when he saw her crying the other day, he begged her to stop because "'everything is going to be okay.'

"He's an amazing kid," said Pam, adding: "When we were on our way home from the hospital the other day, he actually thanked us for being there to support him. He is thrilled that our long-planned trip to Disneyland in June is still going to go ahead, thanks to the generosity of a friend who is donating a place for us to stay.

"I am still so frustrated that I didn't find out about PGD years ago when Benjamin first got leukemia," said Pam, adding that hospital doctors don't believe there is any onus on them to fully inform patients about options like saviour children.

Dr. Marcia Angell, former editor of the New England Journal of Medicine and a medical ethics expert at Harvard University, said in an interview she finds the hospital's position disturbing.

"I believe the parents' actions were not only ethical, but admirable. There are a lot worse reasons for bringing a child into the world than this one. The Obadias have already shown they are extraordinarily loving parents, and there is no reason to believe they would love a new baby any less than the children they have.

"The notion that somehow a saviour sibling would suffer psychologically is the rankest sort of speculation... The problem here is what I call busybody ethics. To justify their specialty, ethicists sometimes feel the need to wring their hands over everything -even something as clearcut as this," said Angell.

To follow Benjamin's cancer treatment, go to the family website: www.mobadia.ca.

Sun Health Issues Reporters

pfayerman@png.canwest.com