Save a Dying Child: Have Another
One
Families Use Genetic Selection to Have
a Baby to Save Their Other Child's Life
http://abcnews.go.com/WN/Health/Story?id=3826596&page=1
Nov. 6, 2007
Most parents would do anything to keep their children safe.
But what can parents do when their child is sick with a deadly
disease and requires a bone marrow transplant?
Many in this situation are turning to a controversial procedure in
which they choose to have another baby genetically selected from
embryos created outside the womb to save the life of their sick
child.
The following are several stories of families who made the choice
to have a genetically selected baby to save their child's
life.
Elisabeth and Michael Hartmann
When Elisabeth Hartmann was 10 years old, she got a baby brother
named Michael who literally saved her from death.
Elisabeth was dying of a disease called Fanconi anemia that wasn't
letting her body make healthy blood.
"She had very little time left," her father, John, told ABC
News.
Elisabeth needed a bone marrow transplant.
"Without treatment she would have died," Elisabeth's mom, Martina,
said.
The best option for Elisabeth's survival were stem cells from a
close genetic match. And that's what Michael delivered just in time
by being born.
"I held the umbilical cord, and [the doctor] milked it into a
small, little cup that I was holding, so we could gather this 1 or
2 ounces of precious blood," John said.
But the fact that the blood from Michael's cord was able to save
his sister is no accident because Michael was no accident.
He was genetically selected for birth from more than 40 embryos his
parents conceived outside the womb using a process called
preimplantation genetic diagnosis.
Dr. John Wagner, director of the Division of Hematology-Oncology
and Blood and Marrow Transplantation at the University of
Minnesota, pioneered the procedure in which a mother is given
fertility drugs to make an increased amount of eggs to better the
odds of creating an embryo with the right DNA.
Michael was chosen for life over more than 40 other potential
siblings because he had what his family needed. The "unchosen"
remain in deep freeze or were donated for research.
John Hartmann acknowledges the ethics of choosing which embryo will
be born can be debated.
"If you have a dying child, I'm not saying it's OK to do anything,
but I think it's OK to use reasonable ethical measures to save your
child's life," he said of his family's decision.
But Michael is loved just for being Michael, though his parents
know that if they hadn't had Michael, they'd no longer have
Elisabeth.
Molly and Adam Nash
John and Lisa Nash knew something was wrong as soon as their
daughter, Molly, was born. Before they even held their newborn
baby, doctors whisked her away.
Molly had no thumbs, no hip sockets, two holes in her heart and was
deaf in one ear.
She was afflicted with the same disease as Elisabeth Hartmann,
Fanconi anemia. In Molly's case, the disease would likely lead to
bone marrow failure and leukemia. She was not expected to live past
the age of 10.
Caring for Molly grew increasingly difficult for her parents. Her
disease caused severe digestive problems for Molly, who had trouble
eating without vomiting. Doctors had to put a feeding tube in her
and perform multiple surgeries on her hands to make them
functional.
When Molly was about 3½ years old, her bone marrow started to fail.
A bone marrow transplant seemed impossible when a matching donor
could not be found.
"We were so brokenhearted, and I really was scared that Molly might
not live," Lisa told ABC News' "20/20" in 2001.
Then Wagner told the Nashes of his procedure that could save
Molly's life, and the Nashes chose to have a baby that was
genetically selected to match Molly's bone marrow.
As the couple struggled to conceive the genetically selected baby
through in vitro fertilization, Molly's condition took a turn for
the worse.
"She was now starting to require transfusions, her blood counts
were such that she was very prone to developing an overwhelming
infection at any time ... we were at the very bottom of what we
could tolerate," Wagner said on "20/20."
Finally Lisa conceived a son that would be able to help
Molly.
"I started screaming and crying. I told Molly she was going to have
a brother," she said.
After the baby, Adam, was born, doctors took blood from the
placenta. It was given to Molly and ended up saving her life.
Adam was the first child born using this procedure, and many people
debated whether the Nashes chose to "play God" when having Adam for
the purpose of saving Molly's life.
"God gave us this technology. If God did not want [preimplantation
genetic diagnosis] to be available, he would not have allowed the
doctors to figure out how to do this," Lisa said.
Anissa and Marissa Ayala
Some parents have tried to conceive a child to help their other
sick children without the help of treatments like preimplantation
genetic diagnosis.
Abe and Mary Ayala made headlines in the early 1990s when they went
public with their intentions to have a third child in the hopes of
producing a bone marrow match for their middle child.
The Ayala's daughter, Anissa, had myelogenous leukemia, and a
suitable donor could not be found.
Both over the age of 40, Abe reversed the vasectomy he had received
nearly two decades earlier and Mary conceived with the hope that
their new baby would beat the one in four odds and be match for
Anissa.
Abe told The Associated Press that if it weren't for his daughter's
illness, "we would have never had another baby this late."
Luckily for the Ayalas, the new baby was a match for Anissa's bone
marrow. Fourteen months after she was born, baby Marissa's bone
marrow was given to her older sister, saving her life.
Abe and Mary's decision to conceive Marissa solely for the purpose
of saving their other daughter's life created ethical debates
across the country. After the transplant, the sisters appeared on
the June 17, 1991, cover of Time and were the subject of the 1993
TV movie "For the Love of My Child: The Anissa Ayala Story."
Now 35, Anissa recognizes the special bond her parents' decision
created between her and Marissa.
"What they did was really, completely just a blessing," she told
Newsday. "My sister is the one who will tell you that without me
she wouldn't be here, and without her, I wouldn't be here."
Anissa now works for the National Bone Marrow Registry.
