July 2007 Archives
What a day!
A bone marrow match has been found in the United States for a six-year-old south Wales boy with a rare disease affecting his immune system.
After a worldwide search for a donor, Rhys Harris, from Newbridge, in Caerphilly county, will undergo treatment in Newcastle in September.
Even though the match is not perfect, the donor's bone marrow will be flown from the US, days before the operation. Rhys will then have to live in a special germ-free room for nine months. His parents, Kevin and Dawn Harris, were thrilled when they heard a match had been found. It's a bit scary but at least he's going to have a fighting chance to live Rhys Harris's father, Kevin
"We were told they found a good match for Rhys," said Mr Harris.
"It's not a perfect match but it's good enough for them to go ahead and reserve the donor," he said. "But we're very, very apprehensive".
Rhys is one of only about 40 people in the world with the rare genetic disease, Nemo, which is crippling his immune system.
"Only two children in the world have had the surgery," Mr Harris said. "One died and the other did live. It's a bit scary but at least he's going to have a fighting chance to live."
Without treatment his parents have been told he may live for only months.
They hope to take Rhys and his four-year-old brother Morgan to Disneyland before his treatment starts.
They intend to move to Newcastle "lock, stock and barrel" during the time Rhys receives his pioneering treatment.
This will involve chemotherapy which destroys his immune system before he is given a bone-marrow transplant.
"Then the grafting takes place which is a precarious stage," Mr Harris said.
A bone marrow recruitment clinic was set up at the Liberty Stadium in Swansea on Thursday to try to find a match for Rhys.
The organisers were hoping to break the world record for the most people registering in 24 hours.
More than 250 people were needed to register as donors to break the world record.
Mr Harris said the search was still ongoing for a perfect match for Rhys and was calling on people to register as donors.
More via BBC News here.
According to this article Sofia will be 3 cm. taller than the average kid...
By Karla Gale
NEW YORK (Reuters Health) - Children born as a result of in vitro fertilization (IVF) appear to be slightly taller than naturally conceived children, investigators in New Zealand report.
IVF has been used for nearly 3 decades, but most of the focus of research has been on pregnancy and neonatal outcomes rather than on school-age IVF children. That's probably because as babies they have few apparent problems, Dr. Wayne S. Cutfield told Reuters Health. "They are thriving, healthy children as newborns," he said.
To check up on older IVF kids, Cutfield, at the University of Auckland, and colleagues recruited healthy children aged 4 to 10 years who were born at full term. Their study included 69 children conceived by IVF using fresh embryos and 71 matched "controls" who were conceived in the normal way.
After factoring in parents' heights, the IVF children were significantly taller than their peers, by about 3 centimeters or just over an inch, the investigators report in the Journal of Clinical Endocrinology and Metabolism.
The research also suggests that hormonal profiles and lipid metabolism are slightly altered in IVF children. "Whilst we have identified differences, these are rather subtle and not obvious," Cutfield said.
Based on current evidence, he assumes that the differences they identified so far are not likely to impair the children as they grow older.
In their current work, the research team is also investigating the effect of "other artificial manipulations beyond the fresh embryos we have studied," Cutfield said, "such as use of frozen embryos."
SOURCE: Journal of Clinical Endocrinology and Metabolism, online July 12, 2007.
The fear of Friday the 13th is called paraskavedekatriaphobia (a word that is derived from the concatenation of the Greek words Παρασκευή, δεκατρείς, and φοβία, meaning Friday, thirteen, and phobia respectively; alternative spellings include paskevodekatriaphobia or paraskevidekatriaphobia, and is a specialized form of triskaidekaphobia, a phobia (fear) of the number thirteen.
More here.
I received this email from Rhys (www.cure4rhys.org) ad a couple of days ago:
I have just had a phone call from Newcastle!!?
They have found a match for Rhys in America, not perfect but good enough for them to reserve it! We still have the World Record to break on Thursday for others so I am not going to let the cat out of the bag to the media just yet, as that may have an effect on the impact I want, and do not want anyone walking away just because of this, as I have always said its not just about Rhys. Please do not call just yet as Dawn is wall papering and I have not told her yet, she is doing such a good job it would be a pity to soil it whilst she is in the zone! He He
Thanks everyone! Now the real tough times will start! However we are lucky to get there!
Nothing immediate will happen, they have just told us to enjoy our summer (think she was taking the ____s) so i guess we will be up in Newcastle in October..
Love from Us All. You have all been amazing!
And today here's the story at the South Wales Evening Post:
BRAVE RHYS HAS FRESH DONOR HOPE
EXCLUSIVE
ROB WESTALL
ROB.WESTALL@SWWMEDIA.CO.UK
15:58 - 12 July 2007
A Six-year-old boy has been given a chance to live.
Little Rhys Harris needs a life-saving bone marrow transplant within the next six months or he will die.
He is one of only 35 people in the world to suffer from Nemo, a disease that destroys the body's immune system.
But with time running out a desperate worldwide search has found a suitable donor for him.
His 42 year-old father Kevin, who is originally from Lan Coed, Winch Wen in Swansea, said: "We've got a match.
"It's not a perfect match but it's good enough for the medical team in Newcastle where Rhys will have his treatment.
"They've told us to enjoy the summer."
Mr Harris, his 36-year-old wife Dawn and four-year-old son Morgan, hope to take Rhys to Disneyland.
The brave little boy, who now lives in Newbridge, Gwent, will then have his ground-breaking treatment in late September.
Bone marrow from his donor in America will be flown over a couple of days before.
Rhys will then undergo chemotherapy to kill off his existing immune system before the transplant.
He will then face a nine-month fight for life in a virtual air bubble while his body's defences recover.
Only doctors, nurses and one parent at any one time will be allowed in the room.
It is hoped that the new bone marrow will start making blood platelets.
"That's all the hope we have," said Mr Harris.
"We've done everything we can to raise awareness and the response from people has been fantastic.
"A few days ago we didn't have a donor for Rhys but at least now we have got a fighting chance."
Heres a link to Rhys website (www.cure4rhys.org) 
A reporter/writer recently contacted me and shared the stories she's found about savior siblings.
Here is the sixth one - Flynn family:
By Jeannie Blaylock
First Coast News
JACKSONVILLE, FL -- When you meet the Flynn family you see a young Navy couple very, very, very busy. Dad is at NAS Jax and Mom is full-time handling those little spats kids get into daily.
To top off their load they have twin babies.
Doreen Flynn, though, has a calm attitude. But she carries a deep well of emotion.
This is where the story turns into a heartbreaker. But there is something simple you can do, by e-mail, to help them. Words of encouragement can do wonders. (The family's e-mail address is at the bottom of this article.)
Here's why the Flynn's could use encouragement now. Their first daughter, Jordan, seemed to be fairly healthy but small for her age. "She was tiny, real tiny and she was wearing size twos," Doreen says. At the time Jordan was four. So doctors ran a battery of tests and eventually found the problem.
Jordan has a rare, genetic blood disorder called Fanconi Anemia. Information for the family was scant. Even the brochure at the doctor's office was two years old and the family was basically told, "We don't know a lot," Doreen remembers.
According to the Fanconi Anemia Research Fund about 1000 cases are documented now worldwide.
Experts there say the disease puts children at a "drastically" higher chance of getting cancer.
Unfortunately Doreen and her husband were both recessive carriers of the Fanconi gene but had no idea.
Doreen says doctors have told their family Jordan will likely get some type of cancer. It could be leukemia or liver cancer or head and neck cancer or vaginal cancer. Her odds of getting cancer are 700-fold higher than other children.
The hope is Jordan could have a bone marrow or stem cell transplant. But her best match would be a sibling. So the Flynns struggled with the decision to have another baby.
They decided to try a procedure called Pre-implantation Genetic Diagnosis. Doreen says, "The procedure had been around for seven or eight years."
They wound up with four embryos and did genetic testing of each one. A lab in Detroit put out the report, which said one of the embryos was disease free. The baby would grow up without Fanconi's. One would be a donor match to Jordan and the other was labeled, "disease status unknown."
So the Flynns called the genetic expert on his cell phone. "He said he was pretty sure it was 99.9% Fanconi free and if it were me I'd take it. So we took both embryos," Doreen says.
Their twins were born at 34 weeks. They named their new daughters, Julia and Jorja.
Then the bad news came. Their twins, both of them, had Fanconi's. The family now had, not one, but three children who would likely have to fight off cancer.
What's more the twins can't donate to Jordan either because they have Fanconi's themselves.
Doreen's eyes fill up with tears when she talks about the twins. "I tell them I'm sorry. We brought them into this world."
Of course, all moms are prone to carry heavy guilt even when something bad isn't their fault.
For Doreen her faith is one source of strength.
She says she's gone to church her entire life and she knows God has some plan. Has she figured it out? No. But she believes it's true.
So what went wrong? Why did the twins have Fanconi's when they were supposed to be disease-free? Doreen thinks perhaps the embryos were mixed up and they were given the wrong ones.
There is hope. But it's a tough road. The girls will be on a bone marrow registry and the Flynns hope they can find an exact match for them. That will increase their odds of beating whichever cancer comes their way. Without the transplants the life expectancy for a Fanconi patient is age 20.
The other positive note is the girls are young and there are many years of science, and many believe miracles, to help them live a healthy life.
Here's how you can help. You can e-mail the family words of encouragement.
The Flynn's e-mail address is: dflynn518@yahoo.com
The family has lived on eight different Navy bases and so hearing support from people on the First Coast would mean the world to them.
A reporter/writer recently contacted me and shared the stories she's found about savior siblings.
Here is the fifth one - Charotte Mariethoz:
Charlotte Mariethoz
Designer baby' bid gets go-ahead
A couple from Leicester have been given permission by the fertility watchdog to have a "saviour sibling" in a bid to help their sick 20-month-old daughter.
Charlotte Mariethoz has the rare blood condition diamond blackfan anaemia and doctors say she needs a stem cell transplant from a genetic match.
Her parents will now use IVF to try to have a "designer baby" to save her.
In 2004, a British boy with the same disorder was saved by cells from a baby brother born after embryo selection.
Michelle and Jayson Whitaker from Chesterfield had Jamie, a saviour sibling for their son Charlie after flying to the US to have the treatment there.
It would be much more devastating to try naturally and find out they haven't got a match and can't help Charlotte
Dr Simon Fishel, Fertility specialist
'We hope this will help others'
Charlotte has already undergone a number of blood transfusions, and is at risk of further complications including a risk of developing a form of leukaemia.
Without a transplant she would need further blood transfusions and steroids, her parents Catherine and Charlie have been told by doctors.
Mrs Mariethoz said: "This is the first step in the right direction. Obviously there is a long way to go yet.
"We hope this decision will now help other families in similar situations."
Genetic match
The Human Fertility and Embryology Authority (HFEA) has issued a limited number of licences for similar treatments before.
But critics say "designing" a child as a tissue donor for a sick sibling undesirable and unnecessary.
Tissue testing involves taking one or two cells from an embryo when it is around three days old.
If there is a match for the existing child, that embryo will be implanted in the mother's womb so it can develop.
Once a baby is born, stem cells are removed from the umbilical cord and stored for four to six months when the transplant to the sick child can take place.
'Devastating'
Charlotte's condition is not genetic, so there is very little chance any sibling will also be affected.
But Dr Simon Fishel, who is treating the Mariethoz family, says using tissue typing will allow a child who is a genetic match for Charlotte to be conceived.
"The family have been told that a non-related stem cell transplant is not acceptable, so maybe they should have more babies.
"And it would be much more devastating to try naturally and find out they haven't got a match and can't help Charlotte."
He said, if the treatment is successful, it would be the first time a saviour sibling would be known to have been conceived and born in the UK.
Last year, the parents of six-year-old Zain Hashmi who requires treatment for the blood disorder betathalassaemia major, won permission to seek to create a saviour sibling from the House of Lords, after originally being refused a licence by the HFEA.
A reporter/writer recently contacted me and shared the stories she's found about savior siblings.
Here is the fourth one - Joshua & Jodie Fletcher:
Saviour sibling' born to Fletcher family
Dr. Kirsty Horsey, Progress Educational Trust
23 July 2005
[BioNews, London] A Belfast woman has given birth to the first 'saviour sibling' conceived in the UK: a baby girl who could help treat her seriously ill three-year-old brother. In September 2004, the Human Fertilisation and Embryology Authority (HFEA) granted Joe and Julie Fletcher permission to have a tissue-matched baby to help treat Joshua, who has an incurable blood disorder. Following successful treatment at the Assisted Reproduction and Gynaecology Centre in London, Mrs Fletcher gave birth to daughter Jodie on 14 July.
Joshua Fletcher has Diamond Blackfan anaemia (DBA), a rare blood condition that could be cured with a blood stem cell transplant from a tissue-matched donor. Having failed to find a suitable existing donor, his parents applied to use preimplantation genetic diagnosis (PGD) to conceive an IVF baby who would be able to provide Joshua with compatible umbilical cord blood cells. If transplanted to Joshua, these cells could enable his body to produce its own healthy red blood cells. Doctors collected cord blood cells immediately after the birth of Jodie Fletcher, who should be a perfect genetic match for her brother.
The transplant will not happen for at least another six months, however, since doctors must first wait and see if Jodie is also affected by DBA. Some cases of DBA are caused by a mutation in a gene called RPS19, but for most the trigger remains unknown. For this reason it was not possible for the Fletchers to use PGD to select an embryo that would definitely be free from the condition. However, the couple are optimistic that the stem cell treatment will take place next year. 'My instinct tells me that the transplant will go ahead', said Mr Fletcher, adding 'the thought of having a Joshua who doesn't have DBA fills me with joy. It's like someone telling you that in 12 months you are going to win the lottery'. But for the time being, the family are simply enjoying their new baby. Mrs Fletcher said that Jodie was 'just as important for herself', adding 'she is another baby in our family, one we wanted anyway'.
The HFEA's decision to allow the Fletchers to conceive a tissue-matched baby followed the authority's recent policy change in this area, allowing couples to use PGD for testing IVF embryos solely to check their suitability as a potential cord blood donor for an existing sick child. Although Jodie Fletcher is the first potential saviour sibling conceived in the UK, another British baby has already helped his older brother in this way. In 2002, the HFEA turned down a request from the Whitaker family, who were also seeking to use PGD to conceive a tissue-matched baby to help a sibling with DBA. Michelle and Jayson Whitaker later travelled to Chicago to conceive their son James, born in June 2003, whose umbilical cord blood has now been successfully used to help treat their son Charlie.
A reporter/writer recently contacted me and shared the stories she's found about savior siblings.
Here is the third one - Anissa & Marissa Ayala
More Babies Being Born to Be Donors of Tissue By GINA KOLATA Published: June 4, 1991 At about 8 o'clock this morning, doctors at the City of Hope Medical Center in Duarte, Calif., plan to transplant bone marrow into Anissa Ayala, a 19-year-old girl who is dying of leukemia. The marrow will come from her baby sister, Marissa. Their parents say they conceived Marissa to provide bone marrow to save Anissa's life. Doctors and ethicists say this is the first time a family has publicly admitted conceiving a child to serve as an organ donor. But many others have done so privately. Parents have had babies to provide bone marrow for siblings and relatives or even, in one case, a kidney. Some parents have sought prenatal diagnosis to insure that the fetus had genetically compatible tissues necessary to serve as a donor, intending to abort it if not. Debate Over Ethics In a recent survey of bone marrow transplant centers, 40 cases were found in which families had confided to doctors that they were conceiving babies to serve as donors. But these parents have shunned publicity, leery of letting the world pry into their ordeals. In the case of the Ayalas, their decision to conceive a child as an organ donor was declared in public for all interested parties to examine. Ethicists and doctors are asking whether conceiving a child as a source of donated organs violates the principle that individuals should be brought into the world and cherished for their own sake and no other motive. Others argue that the children who are conceived to donate organs are deeply loved and that it is unfair to point fingers at parents who have a child to save another person's life. From the point of view of the child, they say, it is certainly better to have been conceived to donate rather than to have never been conceived at all. It may even be justifiable to abort a fetus of the wrong tissue type, some experts say, but others say they cannot condone this. At first, said Dr. Steven Forman, the City of Hope transplant specialist who is caring for Anissa, transplant experts were saying, "What's the big deal? This happens all the time." He said that the risk to a bone marrow donor was negligible and that even for a kidney donor the major risk was going through life with only one kidney. But as the case gained attention, Dr. Forman said, he began to ask himself why he found it acceptable to conceive a child to be a donor and why, if it was so acceptable, doctors and parents had kept quiet about it until now. In conceiving Marissa, the Ayalas were seeking to escape from a desperate predicament. Their daughter Anissa has chronic myelogenous leukemia, a disease that kills 80 to 90 percent of patients within five years of diagnosis. Her only hope is a bone marrow transplant, Dr. Forman said, and even then her survival is far from assured. Twenty to 25 percent of marrow transplant patients die, usually of infections, adverse reactions or a return of the leukemia. Search for a Donor When Anissa was found to have the disease four years ago, she and her family began searching for someone whose tissue type was compatible with hers and who would be willing to donate marrow. There is discomfort for the donor, who is anesthetized while doctors poke long needles into hip bones and withdraw precious tubes of the dark red marrow. The patient, meanwhile, has undergone four days of intensive, whole body irradiation followed by high doses of chemotherapy, a process that destroys every cell of his or her own cancerous marrow. As soon as the donor's marrow is drawn, it is dripped into the patient's bloodstream, where it finds its way into the bones and grows there. But the Ayalas could not find a compatible donor. Neither parent had the right tissue type, nor did their son, Airon, who is 20. A nationwide search for an unrelated donor found none. The Ayalas, who live in Walnut, Calif., announced last February their decision to conceive a baby as the best hope of finding compatible marrow for Anissa. Abe Ayala, the father, had a vasectomy reversed. The mother, Mary Ayala, was 42 when she conceived.
More Babies Being Born to Be Donors of TissueBy GINA KOLATA
Published: June 4, 1991
Dr. Rudolph Brutoco of Covina, Calif., the baby's pediatrician, said that Mrs. Ayala had amniocentesis when she was six months' pregnant and had the fetus's tissues typed. The reason, Dr. Brutoco said, was not to have an abortion -- it was too late by then, Dr. Brutoco said -- but to learn if the baby could be a donor. If the fetal tissues matched Anissa's, doctors would save the baby's umbilical cord blood to give along with her marrow when Anissa had her transplant. Marissa was born on April 3, 1990.
Dr. Forman said he and the other doctors on the transplant team took "an educated guess," that the best time to attempt the transplant would be when Marissa was 14 months old, balancing Anissa's limited time when she would be healthy enough to have a marrow transplant with their desire to allow Marissa time to grow and develop. Anissa was admitted to the hospital on May 22 and her marrow has now been destroyed: she cannot make any red or white blood cells on her own and will die without her sister's marrow.
When the donor is a baby, the parents give permission for the transplant. When child donors are old enough to be included in the discussions, the doctors describe the donation process to them and ask them if they want to be donors, Dr. Forman said. Most readily agree, he added. Survey Uncovers Similar Cases
Decisions like the Ayalas' are apparently not as uncommon as might be expected. Last fall Dr. Arthur Caplan and Dr. Warren Kearney of the Center for Bioethics at the University of Minnesota surveyed 15 out of the nation's 27 bone marrow transplant centers, including the 10 largest ones, asking doctors and nurses whether they knew of similar cases and, if so, what had become of them.
"We found at least 40 children had been conceived for the purpose of bone marrow donation in the past 5 years," Dr. Caplan said. Most were conceived to help an older brother or sister, some for the aid of parent or cousin. "In none of these cases has there been public acknowledgment," Dr. Caplan said.
Transplant specialists said Dr. Caplan and Dr. Kearney might have uncovered just a fraction of the cases. Parents usually do not discuss their decision to have another baby with their transplant doctors, said Dr. Patrick Beatty, a bone marrow transplant specialist at the University of Utah. "Parents usually figure it out by themselves," he said. "Most of the time the parents don't say, 'Dr. Beatty, should we have another baby to try to have a match?' Instead, the women just show up pregnant and the doctors do not ask why.
In his survey, Dr. Caplan said, he learned of one couple that conceived three children in an unsuccessful attempt to have a donor. Another couple had a child with a rare metabolic disorder that could be cured by a bone marrow transplant. They had another baby to be a donor, but the baby turned out to have the same rare disease.
In another family, a woman had been divorced and remarried when a child from her first marriage needed a bone marrow transplant. So she was artificially inseminated with semen from her former husband to conceive a baby to save the child. 'It's Not Rare'
Dr. Norman Fost, a pediatrician and ethicist at the University of Wisconsin School of Medicine, said he has been involved with several families who had babies because they needed a donor. "It's not rare," he said.
In one case, the family had a child with chronic kidney failure who had had two unsuccessful transplants with cadaver kidneys. They had another child and indicated to Dr. Fost that they were doing so to have a kidney donor. When the child was 14 and agreed to donate a kidney, doctors went ahead with the transplant, which was succcessful.
"The family believed God had given them this gift," Dr. Fost said. "They believed the younger child had been created to save the older one."
In another case, a couple conceived a child hoping for a bone marrow donor. They sought prenatal testing with the intention of aborting the fetus if it was not a match, but their obstetrician refused. Dr. Fost said he did not know if the woman was tested elsewhere.
Dr. Mark Evans of Hutzel Hospital in Detroit said he had refused to agree to prenatal tissue tests for a woman intending to become pregnant in a similar case.
"I do not believe that the creation of a pregnancy for the sole purpose of creating an organ donor is ethically acceptable," he said. "I personally think it is too Orwellian for society's own good." Dr. Evans said the woman did not become pregnant.
Dr. Caplan said he did not think it was wrong to have a baby because of the need for a marrow donor. "Basically, people have babies for all sorts of screwy reasons," he said. "Most people have a child without thinking about why. At least in this case, they are having a child partly from this notion of altruism."
Dr. Fost agreed. "Of all the reasons people have children, I think this is one of the better ones: to save a life," he said. Dr. Fost said he thought it was acceptable to use prenatal diagnosis to determine if a fetus would be of the right tissue type and to abort fetuses that were not. He said that since women did not have to give any particular reason for having an abortion, there was no justification for denying them abortions if they gave that reason. Ethicist Is Troubled
But Dr. Robert Levine, an ethicist at Yale University's School of Medicine, said he was troubled by the idea of having babies to be donors and aborting fetuses that were not the right tissue type.
"The ideals of our society are that we are to treat each person as an end and never merely as a means," he said. "It seems to me that when a primary motive for conceiving a child is to produce tissue or an organ, we are getting very close to seeing this new being as a means to another end. This is what raises an ethical impropriety."
Dr. Levine added that the question of aborting a fetus of the wrong tissue type raised even murkier issues. "The nature of the debate exposes to me some of the deficiencies in our capacity to have such debates," he said. The problem is that most people have complex, contradictory feelings toward abortion that "make it hard for thoughtful people to say this is right or wrong," Dr. Levine said.
Ethicists have gone through this debate in discussing whether a woman could have an abortion and donate fetal tissue to a patients with Parkinson's disease or diabetes who wanted a fetal tissue transplant.
Recalling that debate, Dr. Levine said one ethicist would say, "No, that would be wrong," and then another would reply, "The law of the land says you can have an abortion without giving a reason, so why can't you have an abortion for a good reason?" At that point, Dr. Levine said, "Everyone walks away looking unhappy."
Dr. Levine said that he "would like to be counted among those people who say it's way too complex to respond very concisely."
A reporter/writer recently contacted me and shared the stories she's found about savior siblings.
Here is the secon one - Fabian & Ivan Ravelo:
With Faith and Science:
Our Pre-Implantation Genetics Diagnosis Experience
by Marina Ravelo (pedro and marino ravelo live in Chicago area)
On November 26, 2005 the world welcomed Fabian Ravelo, who weighed in at 7 lbs., 9 oz., and was 21 inches long. After two long and emotional years, we had Ivan's matched sibling donor!
In November 2003, we got the call we had been waiting for: our mutations had been identified. We were able to proceed with Preimplantation Genetics Diagnosis (PGD). I immediately contacted my husband Pedro's insurance company and mine. Illinois is one of the states that covers in-vitro fertilization (IVF). We were both initially denied because we were not infertile and PGD was not deemed to be medically necessary. Pedro's company covered IVF for infertile couples, but not PGD. We wrote a letter explaining that we already had one child who was affected by FA and that the combination of IVF and PGD would almost guarantee that we could have a healthy child. After a couple of months, the insurance company agreed to extend benefits to us for the PGD and IVF. After the insurance was approved, we were referred to a prestigious Chicago hospital and quickly made an appointment to start the process. We explained that we wanted to have a healthy baby who could also become Ivan's donor. We were only the second family they had helped using PGD. That should have been a red flag to us, but we were assured that they were a great IVF group. In July that year, I started my hormone shots and produced about 13 eggs— not a great amount, but good enough. The embryos were biopsied, and we were told that we had three perfect matches. I thought I was dreaming when I heard that. It seemed too good to be true. We transferred two of the three. As I sat on the table, already imagining the babies growing inside of me, the lab technician came in and gave me the lab report. The report clearly read "no FA, but HLA status could not be confirmed." I almost fainted. They had implanted two embryos that were not known to be matches! I could not believe how they could have gotten it wrong, since everyone at the clinic knew how crucial it was to have the embryos disease-free and HLA matched. They apologized, but all I could think of was that, if these embryos took, I could be pregnant with healthy twins who may not be able to help Ivan—and that I would not be able to try again until next year. In the end, these eggs did not produce a pregnancy. I was reassured that this would not happen again and that they would be careful next time. I truly believed they wanted to help us, so we continued with them. We tried again in September and in December, but had no luck. We were ready to continue, when I got a call from the IVF doctor. He wanted us to succeed and, since we had tried three times already with his clinic, he thought maybe we should seek another clinic. We agreed. I called the Reproductive Genetics Institute (RGI) in Chicago. They were local, and all of the testing would be done in-house. We walked in with little hope, but were willing to try again. How could I not do everything possible to help Ivan? I had to keep trying. RGI did things a little differently, from the testing of the embryos and adjusting of my medication. I started again in February 2005 and produced 20 eggs, the most I had produced. From the 20 eggs, 15 embryos were created. From those 15, only one was a perfect match. But there was a slight problem. The embryo was not growing at the pace the doctors would have liked. I began to cry. I was so sure this was a bust again. However, RGI still seemed optimistic. They transferred the one embryo and, 10 days later, I got the call I had been waiting for. I was pregnant, finally! We ended up about $15,000 in debt even with the help of insurance, but it was worth every penny. The road seemed endless. I tried so many things to help me get pregnant. I took up yoga to stay calm and focused through the rigorous shots and doctor appointments. I started eating organic food and had acupuncture one during cycles. I don't know if it helped in getting me pregnant, but I felt a little more in control. In the end, what I got for my hard work and perseverance was a beautiful healthy boy, the only person who could save Ivan's life!
A reporter/writer recently contacted me and shared the stories she's found about savior siblings.
Here is the first one - Isaac & Eunice Coutee:
Baby Siblings, Medical Saviors / Oakland Hospital Takes on Clear- Cut Cases of Sick Older Kids
By Janine DeFao
Chronicle Staff Writer
The San Francisco Chronicle
21 June 2005
Edna Coutt calls her daughter, Eunice, her miracle baby.
The first miracle is that the girl was even born.
With her son, Isaac, suffering from debilitating sickle cell anemia, the Antioch woman feared having another child with the genetic disease. But, despite birth control, she got pregnant.
Then doctors found a blood clot in Coutt's lung and advised she abort her baby before having surgery. Coutt refused both the abortion and surgery. She recovered, and Eunice was born healthy.
Now Eunice is about to try for her second miracle -- saving her brother's life.
Next month, after Eunice's first birthday, blood drawn from her umbilical cord at birth will be injected into 8-year-old Isaac's vein at Children's Hospital Oakland in the hope of replacing his ailing bone marrow and curing him of the red-blood-cell disorder that requires monthly blood transfusions and would cut short his life.
Experts are divided over the wisdom of storing babies' umbilical cord blood in private banks, but they agree that cord-blood banking makes sense in one instance -- when a transplant could cure a sick brother or sister.
Isaac's transplant is being made possible by Children's Hospital's Sibling Donor Cord Blood Program, the nation's only program that exclusively stores newborn cord blood, for free, for families with a sick sibling who might need a transplant.
In eight years, the program has banked umbilical cord blood for 1,600 children and facilitated 50 transplants around the nation for illnesses including blood disorders and cancers. About 75 percent of the children have been cured, a figure similar to bone marrow transplant success rates.
"It's a spectacular field," said Dr. Mark Walters, the program's medical director. "We're replacing one blood production system and its defective parts with that from a donor."
The program is funded primarily by a grant from the National Institutes of Health that expires in August. Officials are seeking other funds, and hope money might be available through California's Proposition 71 stem cell initiative.
Siblings have a 1 in 4 chance of having identical tissue types, enabling one to become a bone marrow donor for the other. While cord blood is less immunologically mature than bone marrow, meaning an exact match is not necessary, Walters said it is very rare for a sibling to have mismatched bone marrow but usable cord blood.
But in some cases, a dying child may not be able to wait long enough for a newborn sibling to donate bone marrow, a procedure that is typically avoided before age 6 months. In addition, the potentially fatal transplant complication called graft-versus-host disease is less severe in cord blood transplants.
"Some of these kids need transplants right away. Some of these transplants never would have been done if they had to wait for bone marrow," Walters said. "It's a life-altering experience for families."
That is the hope of the Coutts, who already have seen their lives changed drastically by Isaac's disease.
Born apparently healthy in 1997 in Panama City, the second of two boys, Isaac was diagnosed with sickle cell anemia at 10 months. The Coutts lurched from one medical crisis to another until April 2000, when they opted to come to the United States for better care for the boy.
Edna and her husband, Andrs, traded in their upper-middle-class lifestyle -- with two homes, a nanny and a housekeeper -- for a cramped two-bedroom apartment in Antioch. Andrs, a sales manager in Panama, now cleans houses. The family is also struggling with Isaac's medical expenses, much of which have been covered by a state program.
"It's very hard for me. I had a good job and good connections, and I change to cleaning houses. But Isaac's life is more valuable than anything," said Andrs, who named his cleaning business after his son.
For Isaac, an impish second-grader, life so far has been one of limits and endless hospital visits. In the winter, his mother keeps him bundled against the cold because he's had pneumonia more times than she can recall. Even when the weather is nice, he can't play sports like basketball because she worries about his fragile bones.
He visits Children's Hospital twice a month for transfusions and treatments that remove the extra iron that builds up in his blood from the transfusions.
While the sight of a needle sends many children into hysterics, Isaac is quick to help his nurses find a good vein.
"It's perfect. We've used it six times," he told a nurse on one visit, and joked that she needed her magic glasses when she couldn't get the needle in. Isaac's biggest concern was that he didn't want the IV in his right hand because it would prevent him from playing video games and drawing in the art room during the hours he would spend in the hospital with the narrow tube of dark red blood snaking into his hand.
While his transplant won't be easy -- requiring chemotherapy, at least three to six weeks in the hospital and up to a year for his immune system to fully recover -- Isaac can't wait to be cured of his disease. In sickle cell anemia, the normally disc-shaped red blood cells become sickle-shaped, causing blood clots that can trigger painful crises and damage organs.
After the transplant, "I can go play in the water and the rain. I can catch lizards in the cool (weather). I can do anything I want," said Isaac, a budding artist who keeps his pet lizard on the kitchen table and dreams of one day making a movie like "Jurassic Park."
His family can look to success stories like that of 5-year-old Yasir Shah, who was cured of thalassemia, a blood disorder in which the bone marrow can't make enough red blood cells, after a transplant of his baby sister's cord blood at Children's Hospital three years ago. His sister, Mehnaz, was conceived as a possible donor.
"Basically, she saved his life," said their uncle, Waheed Shah of Lodi.
"We could see Yasir was not a normal kid. All we could do was pray. He would cry a lot and complain. It was hard," he said. "He wanted to play, but he was so weak."
Today, Yasir has a typical kindergartner's inability to sit still and an infatuation with Spider-Man. He still visits the hospital once a month to have blood drawn, decreasing the iron buildup in his blood from years of transfusions.
"He's normal," said his father, Zakir Shah of Lodi, as his son pretended to shoot webs from his wrists. "He goes to school and plays with other kids. He looks like other children, with the same health. We are really happy."
Edna Coutt is hoping for the same happy ending. Walters has told her there is an 85 percent chance Isaac will be cured.
"I told him it's 100 percent. I'm sure," she said. "The Lord sent me this baby to cure my son."
"I'm happy now, even if I don't have a house or a job," Coutt added. "My son, he will be OK. He will grow. I know when he gets healed, it's like erasing and starting again.
"It's going to be a new start."
Isaac Coutté's family gave up nearly everything so he could live. In March he and his family celebrated his ninth birthday in Brentwood , Calif. Isaac's sickle cell disease was discovered when he was 10 months old. Back then the family lived in Panama City, capital of Panama , a Central American country straddling the equator. "That's when our nightmare began," said Isaac's father, Andres. The Coutté family had a good life there, but the country's healthcare system had little to offer children with sickle cell. It's a rare disease in Panama. Sickle cell is an inherited blood disorder affecting the red blood cells. The disease causes red blood cells to become sickle shaped. The malformed cells can clog small blood vessels, blocking blood flow to parts of the body and leading to tissue damage. The spleen, an organ involved in blood cell formation, is frequently affected by sickle cell. And when Isaac was about 1, doctors in Panama Isaac Coutté's family gave up nearly everything to help him survive sickle cell disease.
15 SPRING/SUMMER 2006
Previous page: [Top] Isaac, his mother, Edna, and sister Eunice, ride an elevator up to Isaac's follow-up appointment on the Outpatient Center's fifth floor. [Below] The day Isaac received his cord blood and bone marrow transplants.
This page: [Top left] Isaac looks at a pendant worn by Day Hospital nurse Ekua Hackney-Stephens, PNP. She gave him one just like it. [Top right] In the Day Hospital ,
Diana Oviatt, RN, draws some of Isaac's blood to monitor his immune system's health. [Above] Isaac and his father, Andres sit together, just before the family goes home from Isaac's Day Hospital appointment. [Left] In the Day Hospital, Isaac hugs Elliott Vichinsky, MD, Hematology/Oncology division chief. Dr. Vichinsky treated Isaac soon after he arrived in Oakland and has known the Coutté family for six years.
CHILDREN'S HANDPRINTS 16
www.childrenshospitaloakland.org
removed his damaged spleen. It's not an uncommon operation for sickle cell kids.
Isaac survived, but his parents worried about what they could do to continue keeping him alive. They had spent their savings on the surgery and on private hospital care.
Relatives living in the United States recommended the Coutté family go to Atlanta, New York or Oakland, Calif., for better sickle cell care. In 2000 they chose Oakland.
That's when they left behind their affluent life in Panama.
"We moved for my son," said Andres.
Andres gave up his good-paying job as international sales manager for a sports shoe distributor. Isaac's mother, Edna, left her job as an executive secretary at a company managing a local racetrack. Isaac's big brother Augustine left behind his school and friends.
After the family had settled in the States, Isaac's little sister, Eunice, was born. She was not quite 2 when she gave something to her older brother—umbilical cord blood, stored since her birth, and bone marrow.
Cord blood contains stem cells that, under the right conditions, are able to produce blood-manufacturing cells. Last year, Children's Hospital clinicians infused Isaac with cord blood collected after Eunice's birth. Clinicians had determined that her blood, and the stem cells it contained, would be a good match for Isaac. They hoped the transplant would modify Isaac's blood-making machinery, allowing him to make normal, non-sickled red blood cells. They also performed a bone marrow transplant, hoping the two procedures together could cure Isaac of his sickle cell disease.
In March, Isaac turned 9, a testament to the power of Eunice's gifts, Children's Hospital medical care, the 18 pills Isaac takes every day, and his family's love and faith.
Now Isaac runs around the family's two-story apartment. He gets home schooling from Brentwood teacher Lisa Sotelo, has friends among other Brentwood kids and makes it clear
SPRING/SUMMER 2006 17
Previous page: [Top] At the dining room table, Isaac does math drills with Lisa Sotelo, his Brentwood school district home schooling teacher. [Below] Isaac plays pool with his older brother, Augustine, while behind them their parents prepare dinner in the kitchen.
This page: [Left] Isaac carries his sister Eunice across the living room during pre-dinner play time. [Below] Isaac and his family sit down for a light dinner of sausage and potato soup.
his favorite cowboy and actor is Owen Wilson, co-star of Shanghai Noon and Shanghai Knights . Wilson is the model for Isaac's cowboy look this night.
Isaac is a dramatic boy, given to imitating bits from his favorite movies. He's also a collector of Godzilla memorabilia and a prolific artist. His paintings are displayed all over the walls.
His older brother, Augustine, 14, is quieter. He wants to be a CPA when he grows up. But tonight he focused on trying to beat Isaac in a game of eight ball on the family's miniature pool table.
Meanwhile, their little sister Eunice watched a DVD of Finding Nemo while their parents prepared a light supper of sausage and potato soup, cooked from scratch. They flavored the soup with fresh parsley and lots of ground Parmesan cheese, and served it with soda crackers.
As everyone sat down to share the soup, Isaac quieted down. He had put away his cap pistol, designed to look like a "pearl-handled" six-shooter, and removed his cowboy hat. The family sat quietly while Andres took off his black baseball cap to say grace in Spanish. The cap is imprinted with the name of his new business, a house cleaning company that now supports the family's new life in America: Isaac's Cleaning Service.
Andres gave thanks for all their blessings, including the health of their birthday boy, Isaac. Outside rain fell and wind blew. "We didn't have time for God, now we have time," said Andres. "He made a favor for us."
