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Mother Details Efforts to Use Science to Save Her Dying Son in New Book
Filed under: In The News, Amazing Parents, Books for Parents
Laurie Strongin's new book, Saving Henry, details her family's struggles to save their dying son. Credit: Norma Jean Roy
With a young son in need of a bone marrow transplant to beat a deadly disease, doctors urged Laurie Strongin to get pregnant. The goal: genetically engineer a perfect donor for Henry.
Using science to conceive a third child and save her oldest son's life seemed almost "too good to be true," Strongin, of Washington, D.C., recalls. The strategy, which the family and their doctors pioneered, raised ethical debates among researchers and parents, and was dramatized in a best-selling novel.
Henry was born in 1995 with Fanconi anemia, a rare genetic disease that causes bone marrow failure and can lead to leukemia and cancer. Her second son, Jack, did not have the disease but was not a genetic match to Henry. Doctors offered Strongin and her husband, Allen Goldberg, the opportunity to use preimplantation genetic diagnosis to select and implant embryos that did not carry the disease and would be a genetic match for Henry. Strongin underwent in vitro fertilization with the hopes of carrying a child whose umbilical cord blood could be used for a bone marrow transplant for Henry.
"There's clearly a benefit to being in a family that has not experienced the death of a child," says Strongin, of her decision to pursue the procedure.
After nine failed attempts, Strongin gave up on in vitro fertilization. She and Goldberg later conceived a third child, Joe, who was born healthy but not a match for Henry. Henry, who received a transplant from an unrelated donor, succumbed to his disease in 2002 at age 7.
Strongin, who details her family's journey in a new book, Saving Henry, shared her harrowing experience with ParentDish.
ParentDish: How does it feel to have this book published?
Laurie Strongin: It was like getting through another part of my life with Henry that was challenging and exhilarating. It fulfilled a desire to spend time with Henry.
PD: Are you worried that people will find the book depressing?
LS: It's such a story of hope and such a story of the promise of science. People have said they felt exhilarated and determined to be a different kind of parent after reading it.
PD: What message would you like readers to take from the account?
LS: Make each day meaningful, and what really matters and what's important is the impact that one life can have on the world and so many other people.
PD: What impact do you think Saving Henry will have on conversations about pre-implantation genetic diagnosis (PGD) and creating babies to save the life of a sibling?
LS: This book really humanizes the debate about those issues. Now, when people talk about those issues (they) have a boy to help guide them -- make the conversations more real.PD: What message would you like readers to take from the account?
LS: Make each day meaningful, and what really matters and what's important is the impact that one life can have on the world and so many other people.
PD: What impact do you think Saving Henry will have on conversations about pre-implantation genetic diagnosis (PGD) and creating babies to save the life of a sibling?
PD: What was your reaction when you learned that it would be possible to select embryos to create a child that could be born healthy and a genetic match for Henry?
LS: We thought a lot about it, but there was never a point where we said this is not a good idea. It was a matter of life or death.
PD: What would you have done if genetic testing would have revealed that your second baby, which you conceived naturally, also had Fanconi anemia?
LS: I can't even answer that hypothetical. I don't know because it didn't happen. I was very grateful we had choices. I don't know if I would have gotten pregnant if I didn't know I had choices.
PD: Many people debate the ethics of screening embryos for genetic traits. What are your thoughts on parents using the testing?
LS: PGD is an invasive, painful, time-consuming and expensive procedure that should be used sparingly by doctors and patients to help families produce healthy babies. For couples with a high likelihood of passing along a fatal disease to their child, it replaces luck with certainty in a situation fraught with life-or-death stakes.
I do not understand, nor support, the use of PGD to produce a girl or boy for 'family balancing' or a baby with a preferred eye color or hair color, propensity for a high IQ or heightened sports ability. This corruptive application of a life-saving technology threatens to turn public sentiment against its intended and higher use.
PD: After your second child was born healthy, you started in vitro fertilization to have a third child that could donate cord blood to Henry potentially save his life. Was the decision more about saving Henry or growing your family?
LS: To think that we were conceiving a third child who would be loved any less is misplaced. It's not what it is. Most loving committed parents do anything for their children. The fact that a baby is a savior doesn't mean it's loved any more or less for it. We were always planning to have multiple children. We just thought we would have three kids.
PD: Did you ever consider having another child after Henry died?
LS: We were never trying to replace Henry. We never had any additional children after Henry died. We love the fact that everyone in our family knew each other, and we were all here together. It would be hard to have another child that Henry didn't know and who didn't know Henry. That was unimaginable.
PD: During your in-vitro attempts, you endured 353 injections over three years and dealt with excessive bruises on your stomach and thighs. How did you handle the discomfort?
LS: None of it really bothered me at all. It paled in comparison to Henry and what he had gone through. It was just what I had to do to save his life. Webelieved it was our only hope for Henry.
PD: How did you survive the emotional roller coaster of the nine failed attempts at in-vitro?
LS: It was a waste of time to feel sorry for ourselves. We had no guarantees of how long Henry would be with us. Getting in bed and pulling the covers over our heads felt like a bad choice. There wasn't any time to feel sorry for ourselves. There was too much fighting to do.
PD: Jodi Picoult's novel, My Sister's Keeper, dramatizes the issue of a child being conceived to save the life of her sister. The fictional parents and their decision are portrayed in an unflattering light. What are your impressions of the book, which was written after a New York Times Magazine article about your efforts to save your son?
LS: I've never meet Jodi Picoult and never spoken with her. When I read the book, I thought, "This sounds very familiar." I think it took a nuanced, very gray issue and made it very black and white and aroused fear in people.
PD: You've met families that were successful in conceiving a baby to save another child. Does the book capture that situation?
LS: I felt like those parents (in the book) were far less attuned and less in love with the other two children. Their actions were unfamiliar. I don't think I have anything in common with that mother. I found it troublesome.
PD: Does the book offer a realistic picture of what it's like to be the child created to save a sibling?
LS: My understanding is the donor can never again give blood cells. The donor daughter constantly was giving blood. I don't think that happens. I don't know what the likelihood is, if the transplant failed, that they would go back to the same donor.
PD: A lot of people disagree with the practice of creating donor or savior children. How do you respond to them?
LS: My guess is people who judge others ... probably don't have a child who is going to die without the stem cells of a sibling.
[Knowing] you saved the life of an older sibling who now you have a loving relationship with, it's a beautiful thing.
PD: What issue would you like to see get more attention?
LS: The potential of stem cell research. Doctors can understand what diseases look like at earlier stages [and become] better able to find and improve treatments and cures. That's critically important.
PD: How has Henry's death impacted your other children, Jack, 13, and Joe, 8?
LS: Growing up they each had a very different relationship with Henry. Jack was turning six when his brother died. He was very aware that his big brother and best friend had died. Joe was one. He has no active memory of Henry. Jack is a lot more private of Henry. When he meets people, he will not share that piece of information. But he thinks about him a lot. Joe is really interested in connecting himself (to Henry). He tells people, "I have two brothers. Jack is 13. My brother Henry died."
PD: Do they feel guilty for living?
LS: I don't think they feel any guilt for being healthy. I feel like their overwhelming feeling toward Henry is pride. They look at him as a really courageous person.
PD: You've said having a sick child impacts every aspect of your life. What kind of financial impact did it have on your family?
LS: We always had a roof over our heads. We always had food on our table. We did go through almost all of our savings at that time, but that's what it was for -- to keep us all intact and as healthy as we can be.
I do not understand, nor support, the use of PGD to produce a girl or boy for 'family balancing' or a baby with a preferred eye color or hair color, propensity for a high IQ or heightened sports ability. This corruptive application of a life-saving technology threatens to turn public sentiment against its intended and higher use.
PD: After your second child was born healthy, you started in vitro fertilization to have a third child that could donate cord blood to Henry potentially save his life. Was the decision more about saving Henry or growing your family?
LS: To think that we were conceiving a third child who would be loved any less is misplaced. It's not what it is. Most loving committed parents do anything for their children. The fact that a baby is a savior doesn't mean it's loved any more or less for it. We were always planning to have multiple children. We just thought we would have three kids.
PD: Did you ever consider having another child after Henry died?
LS: We were never trying to replace Henry. We never had any additional children after Henry died. We love the fact that everyone in our family knew each other, and we were all here together. It would be hard to have another child that Henry didn't know and who didn't know Henry. That was unimaginable.
PD: During your in-vitro attempts, you endured 353 injections over three years and dealt with excessive bruises on your stomach and thighs. How did you handle the discomfort?
LS: None of it really bothered me at all. It paled in comparison to Henry and what he had gone through. It was just what I had to do to save his life. Webelieved it was our only hope for Henry.
PD: How did you survive the emotional roller coaster of the nine failed attempts at in-vitro?
LS: It was a waste of time to feel sorry for ourselves. We had no guarantees of how long Henry would be with us. Getting in bed and pulling the covers over our heads felt like a bad choice. There wasn't any time to feel sorry for ourselves. There was too much fighting to do.
PD: Jodi Picoult's novel, My Sister's Keeper, dramatizes the issue of a child being conceived to save the life of her sister. The fictional parents and their decision are portrayed in an unflattering light. What are your impressions of the book, which was written after a New York Times Magazine article about your efforts to save your son?
LS: I've never meet Jodi Picoult and never spoken with her. When I read the book, I thought, "This sounds very familiar." I think it took a nuanced, very gray issue and made it very black and white and aroused fear in people.
PD: You've met families that were successful in conceiving a baby to save another child. Does the book capture that situation?
LS: I felt like those parents (in the book) were far less attuned and less in love with the other two children. Their actions were unfamiliar. I don't think I have anything in common with that mother. I found it troublesome.
PD: Does the book offer a realistic picture of what it's like to be the child created to save a sibling?
LS: My understanding is the donor can never again give blood cells. The donor daughter constantly was giving blood. I don't think that happens. I don't know what the likelihood is, if the transplant failed, that they would go back to the same donor.
PD: A lot of people disagree with the practice of creating donor or savior children. How do you respond to them?
LS: My guess is people who judge others ... probably don't have a child who is going to die without the stem cells of a sibling.
[Knowing] you saved the life of an older sibling who now you have a loving relationship with, it's a beautiful thing.
PD: What issue would you like to see get more attention?
LS: The potential of stem cell research. Doctors can understand what diseases look like at earlier stages [and become] better able to find and improve treatments and cures. That's critically important.
PD: How has Henry's death impacted your other children, Jack, 13, and Joe, 8?
LS: Growing up they each had a very different relationship with Henry. Jack was turning six when his brother died. He was very aware that his big brother and best friend had died. Joe was one. He has no active memory of Henry. Jack is a lot more private of Henry. When he meets people, he will not share that piece of information. But he thinks about him a lot. Joe is really interested in connecting himself (to Henry). He tells people, "I have two brothers. Jack is 13. My brother Henry died."
PD: Do they feel guilty for living?
LS: I don't think they feel any guilt for being healthy. I feel like their overwhelming feeling toward Henry is pride. They look at him as a really courageous person.
PD: You've said having a sick child impacts every aspect of your life. What kind of financial impact did it have on your family?
LS: We always had a roof over our heads. We always had food on our table. We did go through almost all of our savings at that time, but that's what it was for -- to keep us all intact and as healthy as we can be.
PD: What political changes would you like the book to spark?
LS: The freeing up of federal resources to support stem cell research is critical. As genetic testing becomes more widespread, I hope there will be regulation of the industry.
Related: In Vitro Fertilization for Infertility
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ReaderComments (Page 1 of 4)
3-02-2010 @ 1:19PM
Ntertainmntguru said...Hey, what can I say this is a another reason why you need a last will, check this story out
bit.ly/lastwill
Reply
3-02-2010 @ 2:08PM
Masked Marvel said...HONEY, UNCLE DICK ADMIRES YOUR PERSEVERANCE AND COURAGE. HE IS THERE TO HELP YOU IF YOU NEED HIM. HE WILL BE BY YOUR SIDE IN A NEW YORK MINUTE.
Reply
3-02-2010 @ 2:24PM
Lisa said...I would do the exact same thing if I was her....I would do anything to save my childs life...no ifs, ands or buts.
Reply
3-02-2010 @ 2:55PM
Michele said...I agree Lisa, no ifs ands or buts.
3-02-2010 @ 3:19PM
Kate said...Agreed.
3-02-2010 @ 2:57PM
rsspraggs said...i would do ANYTHING to save my child. There is absolutely nothing in this world more horrifying than losing your child. I don't think anyone should have the right to judge what this family attempted. In fact, I find it disgusting that people feel they have the right. I am so sorry they lost Henry.
Reply
3-02-2010 @ 11:36PM
KevinfromKC said...Her strength and resolve is truly amazing. I don't think I could have survived what she has and not be filled with premanent melancholy.
3-02-2010 @ 2:58PM
Jennifer said...Wow, what a heart felt article. I agree with Lisa, I would do the same in a heartbeat. The love a mother or father feels for their children is an amazing thing. I lost my son 2 years ago, not from what Henry had but the emotions are still the same. I would have done anything to save my son, James. Life is just not the same without him here. So to all those parents that are running through life worrying about the house being clean, laundry building up and all those little chores, please remember your child is only young once. Don't waste those precious moments because they are gone before you even realize it.
Reply
3-02-2010 @ 6:43PM
K.M said...AMEN, and it goes by so fast.
3-02-2010 @ 3:00PM
Kelly said...Dear Laura & family,
The courage, love and faith you and your family had in devoting all you can humanly do to save Henry gives those who know or read about you and Henry hope for the future, Laura.
Thank you for sharing your story!
LoveLight to you and yours,
kellyp
P.S. Why is someone using this incredible comment field to post/advertise that they are lonely, single and available? Geez, folks, grow up! There are more appropriate venues for that!
Reply
3-02-2010 @ 3:08PM
Elizabeth said...Our son was diagnosed with leukemia at age 6 when I was 7 months pregnant. Thankfully, my daughter was a perfect match for a transplant for my son. He survived - it's been 25 years. But there is absolutely no doubt in my mind that we would have tried to conceive another child in hopes of a match had my daughter not matched. Until you have been through a situation like this no one should judge another's decision.
Reply
3-02-2010 @ 3:08PM
Kim said...I hate to say it, but I find PGD to be troublesome. It isn't fair to shoulder a child with the burden of their sibling's well being. Granted, it isn't fair when an existing child gets sick, but for the donor child to have a life-long obligation to be available for tissue donation at a moment's notice severely restricts their ability to pursue their own passions and interests, and become their pwn person. Sometimes, the hardest lesson in life is to learn to let go. One's happiness should never be dependent on another, and this includes our children.
Reply
3-02-2010 @ 4:36PM
mary said...wow Kim sounds like you have no problem letting go.
Guess I have the same problem as the other real mothers,
once we have lost our fight we will then let go.
3-02-2010 @ 5:59PM
greenchilegranny said...Kim until you have a dying child do not make judgements on what someone does to save the life of theirs. You have no idea what lengths you would go to to save your child.
3-02-2010 @ 6:08PM
Kim said...I know what lengths I wouldn't go to, and that would be depriving another human being (The donor child) of their God given free will and control over their own body in order to save myself from having to experience that pain.
3-02-2010 @ 6:23PM
my4kids79 said...what i find troublesome with your post is that you would watch your child suffer with something, knowing you could possiably do something about it, yeah it may not work everytime, but at least you could say" you did everything to save your child" and to say " learn to let go" when it comes to your child, you NEVER learn to let go, that was a rotton statement, your talking about a CHILD not an animal or a nice sweater you lost!!!!!!!
3-02-2010 @ 6:38PM
Kim said...I am talking about TWO children. There really is no way to win, because who will speak for the child brought into the world to be a tissue donor? Their best interests are not being upheld, because it's impossible to uphold the best interests of two children with opposing medical interests. Everybody on this blog seems to be taking the perspective of the parent or the sick child. When the donor is being subjected to increasingly invasive and painful procedures that are NOT in their best interests, who upholds their best interests?
3-05-2010 @ 1:37PM
QueenOGreen said...I completely understand your point, Kim. Too often siblings of ill or impaired children are faced with responsibilities they should never face at that age. Its a sad thing to see someone so young unable to be the little kid they should be.
I don't think anyone here could stomach the concept of a human life being devoted only to the supplement of another body. I think that there is a growing fear in this day and age of the "meat market" concept; bodies being "grown" just for tissue and organ use. It is a grizzly thought and no sane human being would be comfortable with the concept of sacrificing a baby for the life of another.
A close look at the above interview, however, shows that this is not the case with little Jack. "LS: My understanding is the donor can never again give blood cells." This outlines a situation far different from My Sister's Keeper, in fact, Ms. Strongin said that she found the word of fiction "troublesome."
The above article only mentions using Jack's umbilical cord which would add no discomfort or pain to his life. If anyone suffered from the procedure it was Strongin herself and no one would deny a mother the right to suffer for her child.
PGD has the potential for much damage, but this family has been extremely responsible and careful in their use of it. Glorious, if you can find any evidence of these people using their children as a "Supply Store" then feel free to rant, but I cant help but think this is an inappropriate place to do it.
My condolences to the Strongin family for their loss and congratulations on their gain.
3-03-2010 @ 9:57AM
steph said...Kim and Elizabeth,
I think that both of you need to do a little bit more research on bone marrow transplants and the use of cord blood. The donor sibling is NOT "on call" for parts or more stem cells. The sick child has to go thru chemo and/or radiation to undergo a BMT, there is a 10% chance of mortality b/c your body is entirely stripped of its ability to fight off any sort of infection, it is a very difficult and dangerous process that can last 6 months to 2 years. IF the sibling donor's stem cells do not engraft to the patient, they will not be using that sibling's cells for another BMT, b/c it was not successful the first time. I am a mom going thru the exact same situation with 2 failed IVF-PGD attempts, It is a very painful, emotionally, physically exhausting experience but I do it not only to save my first born but also to spare anohter child that i love the pain of living with a fatal disease.
3-02-2010 @ 3:09PM
dlei1 said...She is so brave! At least she can go to bed at night knowing she still has two healthy sons, and that she truly did everything she could possibly do to help Henry.
Reply