Va. Beach boy receives a lifeline from his brother

Nov. 24--VIRGINIA BEACH -- Jen Klimkiewicz was expecting her second child in 2007 when a friend emailed her a question:

Was she going to save the umbilical cord blood?

Her friend, pregnant with twins, had decided to do so and said that if Jen signed with the same company, she would get a gift card.

Jen went to a website and read about cord blood banking.

The idea has been considered since the 1990s, when private companies began charging parents a fee for collecting, processing and storing cord blood as a sort of "biological insurance" in case the child or a sibling ever needed transfusions or a bone marrow transplant to treat blood disorders or cancers.

Umbilical cord blood is rich in stem cells, which have the ability to transform into just about any type of human cell.

The American Academy of Pediatrics and the American College of Obstetricians and Gynecologists are concerned that private companies might be profiting from and preying on people's emotions. The groups don't recommend private banking of cord blood for the average, healthy family -- not because it's harmful, but because the chances of using it are so remote.

A policy statement in the journal Pediatrics places the likelihood between 1 in 1,000 and 1 in 200,000.

Jen's husband, Steve, suspected as much and was against the idea, particularly when she told him the cost, which was more than $1,000 -- plus the annual storage fee, currently about $100.

"That is ridiculous," he said. "Don't do it."

Something, though, moved Jen forward, which Steve would discover through credit card bills.

At first, she thought she might have waited too long when she contacted the company a few weeks before her due date in February 2007, but the company put the kit needed to collect the cord blood in overnight mail. Then, two weeks later, when she and Steve were driving to the hospital, she realized she had left the kit at home.

When they got to the hospital, she sent her husband back to fetch it.

Steve says he felt a little sheepish giving it to the obstetrician: "I bet they think I'm crazy spending all this money for this."

But Steve, president of the Cavalier Auto Group, knew it was important to his wife. So when Owen was born on Feb. 7, the obstetrician captured the cord blood in a plastic medical bag, which was then sent to a Viacord storage lab near Cincinnati, where it was processed, frozen and stored in a tank.

The question of banking cord blood comes up occasionally during obstetric appointments and among families that Dr. Eric Lowe has dealt with during the past decade.

Lowe is a pediatrician who specializes in treating cancer and blood disorders -- the field where cord blood is most likely to be used -- at Children's Hospital of The King's Daughters.

Stem cells are immature cells that can reproduce themselves and have the potential to turn into other types of cells. They are found in bone marrow and in umbilical cord blood.

Children with diseases such as leukemia, sickle cell anemia and Hodgkin's disease sometimes receive "hematopoietic cell transplants" to replenish their blood supply with new, healthy cells.

Most people know it as a bone marrow transplant, but doctors can also use stem cells from umbilical cord blood. Cord blood has been used to treat children with certain blood diseases since 1988.</p>

Umbilical cord blood, while secured through a painless procedure, provides a more limited amount of stem cells than getting bone marrow from a person, Lowe said. While it might be enough for a child, it probably wouldn't be enough for an adult. Its use for the child whose cord blood it came from can be limited, too: If the condition is a genetic disorder, the blood will contain the same genetic flaws.

And with a sibling who is ill, there would be only a 25 percent chance that the blood cells are a match.

Besides a proliferation of private cord blood banks, there has also been an upswing in public banks, which have a higher rate of use. Often affiliated with hospitals, they collect, type-screen and cryogenically store cord blood for potential transplantation.

Most public banks don't charge the parents fees, but the cord blood is available to anyone who is a match, rather than just family members. The Save the Cord Foundation, a nonprofit organization formed in 2007, has been trying to raise awareness of the importance of saving cord blood, which is usually thrown away as medical waste.

Most stem cells for transplants come from public registries, such as Be The Match Registry. Since its start in 1987, 10.5 million potential unrelated volunteer adult donors have signed up. The registry began banking cord blood in 1999 and has 185,000 units. Between the two sources, they've helped match stem cells for more than 55,000 transplants.

The second most common match comes from siblings who provide bone marrow; then, stem cells from families who banked umbilical cord blood in registries because of a known family disease, such as sickle cell anemia.

Lastly, there are those who sought out private banks for personal storage on the off chance a family member might need the blood.

Lowe didn't bank his own children's cord blood, and during his 12 years of specializing in blood disorders he hadn't had a patient for whom privately banked blood was used -- until July 2007.

That's when Wyatt Klimkiewicz turned up on his patient roster.

Wyatt is Jen and Steve's first son, born July 26, 2004.

Looking back, they can recall small clues that something wasn't right.

First, he weighed only 5 pounds, 4 ounces at birth, even though he was a full-term baby. Within months, he needed surgery to correct a stomach defect.

He got sick frequently. Jen noticed he bruised easily, in unusual spots, like his stomach. When she changed his diaper, she would see her bruise-like fingerprints on his legs. When he got sick with something minor, such as a cold, it took him longer than other children to recover.

When Wyatt was 3, blood work showed his red and white blood cell counts so dangerously low that he needed to go to Children's Hospital of the King's Daughters immediately for more testing.

Wyatt was tested for leukemia, various viruses and a disease the Klimkiewiczs had never heard of: Fanconi anemia.

The tests for leukemia came back negative.

"We were foolishly relieved," Jen said. "You think, 'What could be worse than cancer?' "

They began learning more about Fanconi anemia, the diagnosis doctors landed on in August 2007.

It's a rare, inherited blood disorder that leads to bone marrow failure. That leads to low levels of red blood cells, so the body's tissues don't get enough oxygen to work well. Too few white blood cells make it hard to fight infection. People with Fanconi anemia are at greater risk of developing cancer, with about 10 percent developing leukemia.

The average lifespan is between 20 and 30 years, with the most common causes of death being bone marrow failure, leukemia and tumors.

Advances in treatment, particularly stem cell transplants, have lengthened survival rates over the years. Wyatt needed a transplant -- and quickly.

That's when Jen mentioned to the doctor they had stored Wyatt's brother's umbilical cord blood when Owen was born six months earlier: "Would that be helpful?"

They said it depended on whether the blood was a match and how much there was.

The moment of surprise for Lowe was not the day Jen mentioned it, but when blood type information arrived in his office:

Owen was a match.

The stem cell transplant took place Oct. 30, 2007, at the University of Minnesota, which has a comprehensive care program for people with Fanconi anemia.

There was just enough for the transplant.

The family stayed in the area for five months. At first, Wyatt was in the hospital and then with his family in an apartment close enough for doctors to monitor the transplant.

Tests showed donor cells in his blood increasing at a steady rate, 15 percent, then 30, then 60 and finally, 100 percent.

They returned to Virginia Beach in February 2008, and Wyatt returned to Minnesota for checkups every few months. Now he goes back every other year.

While the transplant restored his bone marrow, it did not cure the disease, which still puts Wyatt at increased risk of leukemia and certain other cancers, such as those of the head and neck. The chemotherapy and radiation treatments before the transplant also put him at risk for health problems later in life.

Because of that, he sees doctors regularly. He has to be diligent about wearing sunscreen and a hat outside. He probably won't be playing contact sports. He'll likely be small for his age.

"It's hard when you're a boy to be smaller, but we tell him you're probably going to be shorter than everyone else in your class, and that's OK," Jen said. "He doesn't understand that. He knows it's chronic and that he can't get rid of it."

The family is involved in raising money for Fanconi anemia research.

"If Wyatt were to develop a solid tumor, could we treat it with Owen's stem cells?" Jen asked. "We don't know. It depends on if the technology is there."

The two boys sat on a bed in Wyatt's room in late October and talked about some of the projects they have done to raise money for Fanconi anemia research.

"We had lemonade stands," Wyatt said. "This year we made $500."

They also show up at the Sandman Triathlon on the Boardwalk each September, where a team of runners has been raising money since 2008 for Fanconi anemia research.

Wyatt, 9, is taller than Owen, 6, but Owen's a little stockier. What do they like to do together? Play video games, go fishing, play with neighborhood friends, have sleepovers.

"We yell at each other," Wyatt said nudging his brother with his shoulder and laughing.

Wyatt explained what he knows about Fanconi anemia:

"I don't know much about it. I know it's a rare disease. Ask him," he said, pointing to Owen.

"I don't know much," Owen said, shrugging his shoulders.

Wyatt: "I have to go to doctors more often."

"One more thing," Owen said, putting his finger in the air.

Owen then cupped his hand next to Wyatt's ear and whispered.

"He wants me to say that he gave me his blood," Wyatt said. "I didn't have enough blood so he gave me his blood. That's all I know about it."

They share what the family calls a "blood birthday," Oct. 30, the anniversary of the stem cell transplant.

On that day, there's cake and presents for both.

Soon, the brothers will share something else: a sister.

Wyatt doesn't know what to think about that:

"I've heard stories about sisters that are not fun."

Owen nodded his head in agreement.

Several years ago, Jen broached the idea with Steve of having another child.

Steve was against it. He was happy with two. He knew Wyatt's illness could take a toll on the family in the future, which might not be fair to another child. Because Wyatt had a genetic disorder, both he and Jen carried an abnormal gene that meant another child could have the same condition.

Jen talked with adults who had siblings with a chronic illness or who had died young.

This is what she kept hearing: "I wish I had a sibling who understood how it felt."

As the couple reached their late 30s, Jen felt they were running out of time. Again, they turned to medical science for help, this time Eastern Virginia Medical School.

In 1994, the school's Jones Institute for Reproductive Medicine made headlines when a Louisiana couple gave birth to the first live baby screened through a technique called preimplantation genetic diagnosis. The Louisiana couple had lost one child to a genetic disease called Tay-Sachs, which paralyzes and kills its victims at an early age.

At EVMS, doctors used in vitro fertilization -- in which the wife's eggs are joined with her husband's sperm in laboratory dishes, then a cell from each is extracted and its DNA analyzed. Embryos without disease were transferred to the mother's womb.

The technique is widely used now to screen embryos for conditions like cystic fibrosis, sickle cell anemia, muscular dystrophy and spinal muscular atrophy.

When Jen and Steve first went through IVF, none of the embryos survived long enough to be tested and implanted.

The second round of IVF, though, produced 10 embryos, several of which were disease-free.

They also tested them for whether they would be a blood match for the boys, but those tests were inconclusive, according to Sue Gitlin, director of the EVMS preimplantation genetic diagnosis program.

The family's primary goal was a healthy sibling and daughter, so two embryos without the disorder were implanted.

Jen is now pregnant with a baby girl due in mid-December.

Are the couple, both 40, saving their daughter's umbilical cord blood?

Steve laughed and said that's a no-brainer. The kit is already in the house.

Neither expects to forget it this time around.

They hope to never need the stem cells, but as experience taught them, you never know. All kinds of research is going on to explore the uses of cord blood, not just for Fanconi anemia, but for diseases like diabetes and Parkinson's and for brain injuries.

But that's all in the unknowable future.

"We have to hope the research stays ahead of us," Jen said. "It has so far."

Elizabeth Simpson, 757-446-2635, [email protected]

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