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Parents hope sibling's stem cells will give daughter a second chance
Giving birth to save a life
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Photo by Dana Rene Bowler
Hailey Joy Kent, with twin Ryan, left, and mother Maria, is battling leukemia. Maria and her husband, Rick, hope cells taken from a baby delivered by a surrogate mother will help prolong the life of Hailey Joy, also pictured below.
Photo by Dana Rene Bowler
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Photo by Dana Rene Bowler
Hailey Joy Kent was diagnosed with a rare form of leukemia when she was about 3 months old. She underwent a stem cell transplant to help fight the disease; there is always the chance of a relapse.
Maria and Rick Kent want to do all they can to save their 23-month-old daughter from leukemia.
That immeasurably powerful desire is propelling the Simi Valley couple down an intricate and controversial path. They plan on having another child to increase the chances that Hailey Joy Kent, a mischievous toddler who can't yet speak, will be able to find a match if she needs a second stem cell transplant.
Because Maria Kent had nine miscarriages over about 10 years, her fertilized eggs will be implanted into a surrogate who is donating her time and womb.
In the best scenario, the baby will be born and the stem cells that were transplanted into Hailey a year ago last week will continue to protect her from acute lymphoblastic leukemia.
Hailey's doctors at Childrens Hospital Los Angeles said it's too early to talk about a second transplant. But chances of a relapse are high, and if that happens, Maria Kent said, stem cells could be taken from the baby's preserved umbilical cord blood or the cells could be extracted from bone marrow. Hailey could get a transplant and a second chance.
"This opportunity fell into my lap," said Maria Kent, watching Hailey race through the living room. "If I didn't do it and she relapsed, I couldn't live with myself."
Giving birth to make stem cells, bone marrow or organs available for transplants is rare but happens enough that it has earned a label: savior siblings. The debate over whether someone else's need justifies birth touches on the value of life, compassion, medical technology and religion. It's so intricate, ethicists carefully plot out both sides.
"You don't use people as a means to an end. Children are not commodities, and they're not put here to service us," said Miriam Piven Cotler, visiting professor at Loyola Marymount University's Bioethics Institute.
But, she said, it's difficult to argue against saving a life if there's no harm to the infant donor, and the parents are "prepared to love it no matter what and place it at the same level as the existing child."
John Evans, a UC Davis sociologist, said ethicists focus on informed consent and faith-influenced views on in-vitro fertilization and surrogacy, but outsiders react on a gut level.
"I do think when push comes to shove, the American would think it's weird or creepy," he said. "But if you explained it to them, I think the majority would say that's a reasonable thing for these parents to do."
The Kents say they want a bigger family. They will love and care for the baby exactly the same as their other three children: 22-year-old Heather and twins Ryan and Hailey. They say a surrogacy agency that is donating its services is trying to raise $15,000 to defray other costs that must be paid to make the birth possible. They say their decision to pursue surrogacy was easy to make.
"Pretty much any parent would do it to save their child," said Rick Kent.
A desperate journey
Maria Kent is a 40-year-old, church-going homemaker who organizes bone-marrow and blood drives. Her husband is 44 and works as a construction manager who builds rides at Universal Studios.
They've always wanted more children. More than two years ago, after a long line of miscarriages, they paid about $60,000 to have a surrogate carry a child, who turned out to be children, as in twins.
Ryan and Hailey were born June 6, 2006. Ryan is healthy, but when Hailey was about 3 months old, she started vomiting and developed a fever that wouldn't break. She had a form of leukemia that made her white blood cells mutate and grow uncontrollably, shoving aside the healthy cells.
She needed a stem cell transplant. Neither her siblings nor her parents had matching tissue types, but a partial match was found through a depleted national registry. Intense chemotherapy was used to wipe out the cancerous blood cells and with it much of Hailey's immune system. Stem cells from an umbilical cord were transplanted to act like seeds and grow healthy blood cells.
A year after the transplant, Hailey pushes a toy lawn mower through the family's Simi Valley home, while Ryan roars around with a cement truck. Tests show no sign of cancer. Hailey's immunities remain depleted, and the new blood cells are still struggling to adjust to her body. She can't play outside or venture outside the house. She takes about 10 kinds of medication, including steroids. The medicine and the chemo help explain why she's several inches shorter than Ryan and bald, aside from blond fuzz.
Specialists have told the family that Hailey has about a 25 percent chance of living more than five years.
"The kind of cancer she has most kids don't survive," said Maria Kent.
Ethical questions
The phone call came out of nowhere. The owners of the Surrogacy Options agency in Maryland and Illinois had read about Hailey Joy. They wanted to find the Kents a surrogate parent, and they wanted to do it for free.
They came up with a list of 20 women willing to donate their services as a surrogate. They won't say much about the woman the Kents selected except her name is Misty and she's a 34-year-old homemaker from Texas.
"She said she felt like she was called to do this for them," said Jamie Aidis, co-owner of the surrogacy agency, adding that embryos could be implanted this summer. "We need to move as quickly as we can on this."
Before they're implanted, embryos from the Kents will be analyzed by a geneticist in a Michigan lab to make sure the bone marrow matches Hailey's as closely as possible. The Kents want only one embryo implanted, but two could be used to increase the odds of a pregnancy, meaning there's a chance for multiple births or none at all.
"In a given cycle, you could say conservatively that there's at least a 70 percent chance it won't work," said Dr. Rick Buyalos, the Thousand Oaks fertility specialist who is donating his time to do the in-vitro work. Despite the odds, he thinks the surrogate birth is worth trying.
"It gives a chance for Hailey to have a normal life expectancy," Buyalos said. "Odds are relatively high that she won't survive to see her fifth or sixth birthday."
But the process turns babies into commodities used because they have blood or tissue that can help others, said the Rev. Richard Benson, Catholic bioethicist at St. John's Seminary in Camarillo.
He worries that using birth to save someone's life implies the person in need is more important than the baby being born. He said the donor has no way to give consent for a transplant.
The use of a surrogate is another barrier, twisting the natural process of giving birth into manufacturing babies, Benson said.
"Sincerity and a desire to love doesn't remove the ethical boundaries," he said.
Other ethicists speculated about the possibility the transplant could become more involved if problems occur with the umbilical cord. Medication could be used that flushes stem cells from bone marrow into the blood, or needles could be used to extract cells directly from the hip bone.
Maria Kent said a marrow transplant would be considered only if Hailey needed the procedure when the baby was older. That decision, she said, would be made by a doctor.
She also noted the umbilical cord blood would be thrown away if it wasn't used in a transplant. Whether the cells come from the umbilical cord or elsewhere, bioethicist Art Caplan of the University of Pennsylvania characterized the process as a way to rescue a diseased child with only minimal cost.
"I don't see it as exploitation as long as parents go in with their eyes open realizing the new child's cells may not save their child," he said.
Doctors at Childrens Hospital said it's too early to think of a second transplant. They said there's no way to know if Hailey could survive the intense chemotherapy that is a precursor to a transplant.
"I would pray and hope that she doesn't have a relapse," said Dr. Neena Kapoor, director of the hospital's bone marrow transplant program.
The Kents want to do more. If Hailey does relapse and if a second transplant is her only chance, they want to be prepared. The Surrogacy Options agency has found lawyers willing to donate their time and continues to raise funds for the surrogate birth.
Maria Kent knows there are no guarantees. What she's looking for is a chance. She believes another baby will bring it.
"I just think it's God's plan," she said.
Posted by SurrogacyOptions on June 1, 2008 at 5:44 a.m. (Suggest removal)
For those who would like to donate to this effort, a special benefit fund has been set up at Wells Fargo Bank. You can walk into any Wells Fargo and tell them you'd like to make a donation to The Hailey Kent Benefit Fund, or you can send a check payable to Hailey Kent with "Hailey Kent Benefit Fund" in the memo line. The address for the bank is:
Wells Fargo Bank
2740 Cochran St
Simi Valley, CA 93065
You can also donate by using PayPal: http://www.Paypal.com. The email address to use is benefitfundforhailey@yahoo.com
Thank you!
Jamie Aidis & Dana Corraini
Surrogacy Options
www.SurrogacyOptions.com
Posted by whatever on June 1, 2008 at 10 a.m. (Suggest removal)
Good Luck, I sincerely hope that all works out for you. I find nothing wrong with doing this. If it saves this little darling, that is also what matters. God Bless.
Posted by NRSPNKY on June 1, 2008 at 11:11 a.m. (Suggest removal)
Hello! As a nurse, mother, as well as surrogate mother I completely support this family in this choice. Your child to be will be made to feel very wanted and special for helping their big sister in such a grand way. I wish you beautiful days ahead and good luck with the embryo transfer and surrogacy!
Posted by Mojave on June 2, 2008 at 4:40 p.m. (Suggest removal)
There is a 25% chance that the savior baby will have cord blood that is a perfect match for Hailey's tissue type. Less than perfect matches are tolerated in sibling cord blood transplants but that doesn't mean that Hailey will escape the very immunological effects she suffers now. What psychological damage does the savior baby risk if it turns out not to be a savior baby and Hailey dies after the cord blood transplant?
Posted by SurrogacyOptions on June 4, 2008 at 7:24 p.m. (Suggest removal)
The odds are 25% that any future Kent baby will be a match for Hailey. However, with special technology, the odds will be 100% that the future baby will be a match. Preimplantation Genetic Diagnosis (PGD) will be used to make sure any embryo implanted will be a 100% match for Hailey.
Posted by Mojave on June 6, 2008 at 7:40 p.m. (Suggest removal)
If there is only a 25% chance of a perfect match, how many embryos will have to be created and tested by PGD and discarded in order to have a perfectly matched embryo for implantation? One, ten, 100? How many perfectly matched embryos have to be implanted to get one to term? How about the costs? Is it ethical for a for-profit group to be soliciting donations for this procedure?
Posted by choices on June 8, 2008 at 3:06 p.m. (Suggest removal)
I wish everyone involved much luck! I fully support The Kent Family's decision to have another very wanted child! Good luck!
Mojave...Who said anything about discarding embryos once they are tested? Seems like you don't have all the answers so you are jumping to conclusions. Yes, I believe it is 100% ethical for a business to help raise funds to support any benefit fund they choose.
Posted by Mojave on June 9, 2008 at 7:41 p.m. (Suggest removal)
O.K. Choices; fair enough. Help me with the answers. Do you know what will become of embryos created by the Kents that are not 100% HLA matches for Hailey? Remember, Mrs. Kent needs a surrogate. Will they be banked? Donated to an infertile woman? Discarded? Don't make the same mistake I made and guess at the answer. I am not a "Right-to-Lifer" who worries about the fate of unused embryos. I am curious about the way that expensive, life-changing decisions are made in emotionally accelerated environments. And the ethical issue I raise is not about a business raising money for "any" benefit fund, but about a business soliciting donations that will benefit itself. Additionally, commercial cord blood bank marketing efforts have surged lately based on slim evidence of useful outcomes. To benefit whom?
Posted by SurrogacyOptions on June 10, 2008 at 7:17 p.m. (Suggest removal)
Surrogacy Options is not profiting from this. We have donated our services. The Hailey Kent Benefit Fund is to benefit *Hailey*. The bank account is in Hailey's name, not ours. It seems you *are* making a lot of assumptions. As for what the Kents plan to do with their embryos, it's nobody's business but their own.
Posted by Mojave on June 12, 2008 at 12:14 a.m. (Suggest removal)
Surrogacy Options--thank you for your help. I am not making assumptions; I am asking questions. You are the perfect source for answers. I’ll bet most folks don’t grasp the complexity of third party reproduction. Good information will benefit everyone. Will you agree that people who are willing to donate money to help save Hailey are entitled to full disclosure?
May I ask …
You are donating your services. Do your services include egg harvest, IVF, testing and transfer? Do you have experience working with families requiring Preimplantation Genetic Diagnosis?
In your experience, how many embryos do you anticipate creating and testing in order to find one with a perfect HLA match? Happily it might be the very first embryo, but statistically what is the expected range?
How many eggs have to be harvested to satisfy that range? How many eggs can be harvested per procedure?
How many qualifying blastocysts are needed to affect a successful transfer?
What percentage of transfers-to-term are you experiencing? How do you take that into account when you are attempting a savior baby?
Will antibodies introduced into the cord blood by the gestational surrogate confound Hailey’s immune system after the cord blood is transplanted?
Taking the answers to these questions into account, how much money do you need to raise in order to reasonably fulfill the expectation of producing a sibling that will save Hailey’s life? There is no guarantee, but you are attempting a steep objective. How much will it cost and what is your go-no go threshold?
What proportion of the total cost will your services cover?
Have you received or do you expect to receive any money from commercial enterprises connected with any of the services in toto that will be required to provide Hailey with a transplant?
Please permit me one assumption: That any favorable publicity arising from a successful outcome will be a richly deserved happy accident.
Posted by SurrogacyOptions on June 12, 2008 at 7:26 p.m. (Suggest removal)
"Mojave", this is Jamie from Surrogacy Options. I am an Intended Mother with two babies born through Gestational Surrogacy. I am also a cancer survivor myself. I had cancer while I was pregnant. I continued to carry my son against doctor orders to get him to term before I had a radical hysterectomy to save my life. I have personally used up all of the embryos I created through IVF for use during my Gestational Surrogacies. It was important to me. I tell you this so you know that I can appreciate where some of your questions are coming from.
I wouldn't hesitate to answer you, but based on the way you are asking your questions I don't feel your intentions are good.
Dana's and my motives are pretty simple. We are mothers ourselves and the thought of one of our children going through this is unthinkable. We want Hailey to have a chance. That's it. If this were my child I would not hesitate to do what the Kents are doing. Having battled cancer myself, I am just THANKFUL it was me and not one of my children. Most people who have battled cancer (and who have a child) will tell you this. Have you personally battled cancer? Do you have a child? Do you have a child who has battled cancer? Until you've walked in those shoes you have NO IDEA what you would do. I'm sure a lot of your present ideals would go flying out the window if you ever did have to face this situation.
Please let me REPEAT ... SURROGACY OPTIONS is NOT profiting from this. We haven't received nor will we receive one red cent for helping the Kent family. No one is giving us money and no one is compensating us. We have spent our own money for any expenses we've incurred helping them. It is not coming out of the benefit fund. Is it so hard for you to believe there are people in the world who will help someone else without an ulterior motive? It's sad that we have to defend ourselves like this for simply reaching out to help someone else. It's actually quite disgusting.
I hope that out of respect for the Kent family you will let this rest now. Thank you.
Posted by Mojave on June 13, 2008 at 2:37 a.m. (Suggest removal)
Jamie, please, what is the price of the moral high ground? My wife’s breast cancer doesn’t get me into this conversation and the sparkling health of my children does not keep me out. Moral justification is a powerful disengagement mechanism.
My work brings me into direct contact with seriously ill patients and the nurses, doctors and scientists who try so hard to help them. I have a seat that gives me a clear, objective view into how both worlds work. Do you want to hear the story of a twenty-eight-year-old woman whose milk wouldn’t flow after giving birth to her first child because she had undiagnosed stage IV breast cancer? Or of a woman who was unable to out-distance end stage ovarian cancer even though she raced from clinical trial to clinical trial? How about a beloved pediatrician whose life was stolen by untreatable metastatic cancer? He was my friend.
Here is a sweet platitude: “Never deprive someone of hope-- it may be all they have.” I imagine that we have all witnessed, not once but many times, honest people who offer and accept hope that is not real. That is fine and loving work to be done by friends and family but it has no place in the proper conduct of professionals. It is not in the public interest to feed and forgive a deceptive mythology that allows professionals to make uncareful claims. This conduct should not be made personally and socially acceptable by portraying it in the service of moral ends. I have faced experts with intimidating credentials and I’ve had to insist they qualify their claims.
I’m afraid I made a mistake by asking about the fate of unused embryos in earlier posts. It seems to have inaccurately framed the perception of my point-of-view. That’s not what has my knickers in a twist and I admit to being harsh.
I have no doubt that you and Dana are sweet and honest people. I believe if you answer my questions, maybe not to me but certainly to yourselves for your own sake, it will illuminate your fitness to help the Kents. It is fair to ask for some measure. You are making the claim that you can directly affect the creation of a life that may save a life. Simple motives and infectious spiritual uplift do not entitle you to enter into such a demanding, consequential enterprise. You cannot have your words and actions judged by your motives. Pick up any newspaper and written large every day is the story of good intentions, unmatched by a grasp of complexity, paving the road to failure.
Can you answer my questions? Let’s let all of our ideals go out the window and replace them with sober principles. Do you have the experience and talent to take the Kent family through this process? If the answer is yes, I’m on your side. And I’ll still be on your side if you carefully conclude that the answer is no.
Peace.
Posted by ipsexpectmiracles on July 3, 2008 at 12:35 a.m. (Suggest removal)
A responsible parent will do everything possible to protect the health of their child. We have more choices than ever before and need to use every resource available to protect the health of our children.
There are many people that are donating their time, service, money and knowledge to help a child and family as best they can.
I think that they should be praised for their efforts in this noble cause.
www.ipsexpectmiracles.com
Posted by bethanykay6 on July 13, 2008 at 11:27 a.m. (Suggest removal)
I think surrogacy is amazing. To help others create life that they themselves are unable to. Surrogacy needs to be shown in a positive light. Yes, there are negative aspects to it, but that is with everything in this world today.
As for the Kents---I wish them nothing but the best. I hope and pray everyday that their surrogate becomes pregnant quickly and everything goes smoothly. I hope that little Hailey never needs to do another surgery and that she lives a long and healthy life.
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