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.”