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TRANSCRIPT, cont.

JOHN DONVAN (CONTINUED)
(Voice Over) And it was through a medical contact that Allen and Laurie got the idea of conceiving another child, whose umbilical cord blood could be used for Henry's bone marrow transplant. And they learned they now had this option because of a relatively new technique for screening embryos, called PGD, Pre-implantation Genetic Diagnosis. PGD is a way to screen embryos for genetic problems. Combined with some other tests, it meant this for Henry's parents, they could now determine whether an embryo they conceived was both a good match for a bone marrow transport and was also free of Henry's disease. In other words, they could now conceive and know from the start whether an embryo had what Henry needed. And though Allen and Laurie were not infertile, they had Henry naturally and his little brother Jack, they now proceeded on a crash program of in vitro fertilization, creating embryos in a petri dish, as many as they could, to improve the odds. Again, from Laurie's journal . . .

LAURIE STRONGIN
Our plan was to do in vitro fertilization, during which I would make 15 to 20 eggs, all of which would be fertilized with Allen's sperm. Of these, our hope was that at least three would be healthy or free of Fanconi anemia and perfect genetic matches for Henry, and therefore a bone marrow donor. It feels strange describing them this way because what they are, are potential new editions to the Strongin Goldberg clan. Children who we would love, just like Jack and Henry, who would have needs, wishes, desires.

JOHN DONVAN
(Off Camera) So, everything began to hinge on your being able to conceive another child, who, number one, did not have Fanconi, and number two, who would be a match for Henry, so that you could use his, basically, umbilical chord placental material for a bone marrow transport.

LAURIE STRONGIN
Right. Which is important to say is something that they normally, after delivery, throw away. It is medical waste.

JOHN DONVAN
(Off Camera) You know, I think some viewers will look at what you're doing and say, well, you were trying to have a child serve as a cure for your older boy's illness. What is your response to that?

LAURIE STRONGIN
This just happened to be a way to have a child who we knew would be healthy and not have to face what Henry had faced. And I think it's a value to Jack and to, you know, whatever baby might have been produced through this process, to be born into a family that did not suffer such a tremendous loss. That's good for that child. This is not just something that's only good for Henry. It's good for a whole family. People have babies for lots of different reasons. Having one that would be able to survive and also, you know, essentially, cure an older sibling of a fatal disease seems like pretty up on the top of the list of good reasons to have a baby, to me.

ALLEN GOLDBERG
And I feel that we were fortunate that, the technology exists.

JOHN DONVAN
(Voice Over) Besides, they say, they had always planned on adding to their family. But this method was never a sure thing. And it was anything but easy.

LAURIE STRONGIN
You can't do it if you don't think it's going to work.

JOHN DONVAN
(Off Camera) Why?

LAURIE STRONGIN
It's too hard.

JOHN DONVAN
(Off Camera) How hard is it?

LAURIE STRONGIN
It's so hard. It's so hard that it's hard to remember how hard it was.

JOHN DONVAN
(Voice Over) The injections beat up Laurie's body. Her trips to the clinic in New York split up her family. The rise and fall and rise of their hopes wore everyone out. And you did it nine times altogether?

LAURIE STRONGIN
Nine times. So, I mean, I think in the end I counted and I had Had 353 shots over a period of three years. Every shot, you're thinking, this is life or death. Every visit to the doctor, you're thinking this is life or death.

JOHN DONVAN
(Off Camera) You mean Henry's life?

LAURIE STRONGIN
Henry's life or death.

JOHN DONVAN
(Voice Over) Late last year, a breakthrough, it was all over the news that the process Henry's parents were using had worked, in another family.

PETER JENNINGS, ABC NEWS
(Off Camera) In a Minneapolis hospital today, a 6-year-old girl is recovering from a transplant of new cells which may save her life.

JOHN DONVAN
(Voice Over) Henry's parents knew this family and were happy for them. But at the same time, they were discouraged. Nine times Laurie and Allen had tried in vitro fertilization. They had produced 198 eggs, created more than a hundred fertilized embryos, but only a handful were the right match for Henry. And of those, not a single one survived after being implanted in Laurie's womb. Her journal on just one of those occasions.

LAURIE STRONGIN
I was sick of feeling sick and tired. I was sick of being away from my husband and children. I was sick of having my hopes up and then dashed. I was sick of the whole damn thing. I looked Allen in the eye and I said, face it, this is never, ever, ever going to work.

JOHN DONVAN
(Off Camera) What kept going wrong?

LAURIE STRONGIN
Certainly not egg production. I mean I, you know, I think that one doctor called it, sort of like, the Goldberg curse or something. But I don't know. I think what it all came down to was pretty much bad luck.

JOHN DONVAN
(Voice Over) In spring of 2000, Henry was getting sick more often. If he were going to have a bone marrow transplant, it would have to be right away, with a stranger's bone marrow, with no sibling to save him.

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graphics: Nightline: Henry's Story

JOHN DONVAN
(Voice Over) Two summers ago, with his parents still trying to create a child whose umbilical chord blood could be use to save him, Henry's blood platelet count had dropped to less than 10,000, which is dangerous. He had developed a major infection and a raging fever. It was time to change strategy.

ALLEN GOLDBERG
Our transplant doctor advised us that time had run out and that it would be too great a risk to wait any longer.

JOHN DONVAN
(Voice Over) So, they abandoned their efforts to give birth to a genetic match for Henry and went to the University of Minnesota, the Fairview University Medical Center, to get Henry a transplant using the bone marrow of a stranger, as closely matched to Henry as possible.

JOHN DONVAN (CONTINUED)
(Voice Over) It was a terribly rough time for a little boy and for his parents who had to watch his hair fall out from the chemotherapy and the vomiting and the diarrhea the and mouth sores.

JOHN DONVAN (CONTINUED)
(Voice Over) Very often it's the bone marrow transplant itself that kills a child because it so weakens his immune system. Henry has had plenty of close calls, plenty of serious infections.

ALLEN GOLDBERG
He's also had a number of infections that have been very difficult to identify and to treat. What we have done is had a number of procedures, invasive procedures, including a biopsy of Henry's brain, a biopsy of his liver and biopsy of his lungs to try and identify the infection that has been bedeviling the doctors and Henry.

JOHN DONVAN
(Voice Over) Henry's life is still lived in and out of doctors' offices and he's got remarkable spirit.

JOHN DONVAN (CONTINUED)
(Voice Over) They scan him, they stretch him, they look in his eyes.

JOHN DONVAN (CONTINUED)
(Voice Over) They run him down the hall. And yet, if you look at Henry today, this was when he got in to see the Minnesota Twins in batting practice last summer. He's obviously still kicking and then some, in fact, a whole lot.

JOHN DONVAN (CONTINUED)
(Voice Over) But not everyone agrees with what they tried to do. This summer, Henry's story appeared in "The New York Times" Sunday magazine. One reader wrote, "It seems like a mental illness has overcome these parents and 'saving' a genetically defective, not savable child has taken over decency, reason, and all sense of morality." What's your response to that?

LAURIE STRONGIN
Look at these pictures behind us. People who question why we're doing this, they can't possibly understand, I don't think, the extent to which we love Henry and Jack and want to retain our family's integrity. And also, just the high quality of life that they're living that, you know, we're hoping is only going to get better.

JOHN DONVAN
(Off Camera) When you hear the argument made about, again, about the research, that it's really violating the sanctity of human life to be, you know, fooling around with embryos, what's your response to that?

ALLEN GOLDBERG
That's not my child. That is. I mean, you cannot even see what those people are talking about with the naked eye. My own personal definition of life is not the four cells sitting in a cold petri dish somewhere. That's my definition of life.

JOHN DONVAN
(Voice Over) Henry's future remains uncertain. His transplant may head off leukemia, but it does not cure Fanconi anemia, which tends to bring on other cancers later in childhood or in the teen years. His parents believe their only choice is to hope that someone will find a cure by then.

LAURIE STRONGIN
I am left with my belief system intact. I believe in love and science. Nothing more. Nothing less. I believe that we can't control everything, no matter how good it sounds or looks on paper. I believe it's the parents' responsibility to care for and protect their children, especially when the stakes, a chance at life, are so very high.

JOHN DONVAN
(Voice Over) I'm John Donvan, for "Nightline," in Washington.

TED KOPPEL
(Off Camera) I'll be back in a moment with a brief final note.
graphics: Nightline: E-mail

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TED KOPPEL
(Off Camera) As most of you now know, Henry Strongin Goldberg died last night at the age of seven years, two months. That's our report for tonight. I'm Ted Koppel in Washington. I hope we'll see you shortly on "Up Close."
 

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