"It was my own insurance, so that if something happened later they’d have a good source [for a transplant]," Nocita says. "Parents are willing to pay anything for their child’s life, so if it saves your child’s life in the long run ... the $1,800 isn’t that much."
Today’s expectant parents face many decisions. Modern technology has thrown in one more: Store your child’s umbilical cord blood, donate it to a public bank or let it be thrown away?
Until a few years ago, umbilical cords were thrown away. Then researchers discovered stem cells in the cord can treat diseases such as leukemia, sickle cell anemia and cancer.
Fearing their child or a family member might contract one of those diseases, some parents choose to privately store their child’s cord blood. Some donate it to public cord banks for other sick patients.
About 250,000 families in the United States have banked their child’s cord blood in private facilities, says Rita Kennen of the private Cord Blood Registry. About 40,000 others have donated it for public use. To date, some 5,000 cord blood transplants have been performed worldwide, Kennen says.
But banking a child’s cord blood may not be right for every family.
The cost of private facilities is one reason; questions about whether the blood will be needed—or useful—is another. Meanwhile, parents who donate their child’s cord blood have to consider it may be used for research.
Privately banking a child’s cord blood costs about $2,000, with additional annual fees of more than $100.
The chances the child will need the blood are estimated at anywhere from 1 in 1,000 to 1 in 200,000, according to the American Academy of Pediatrics.
If your child does need it, having his own cord blood available is important because it eliminates the need for immunosuppressants, the blood is available immediately and no donor has to undergo a bone marrow transplant.
However, diseases treated now by cord blood transplants may be treated in new ways in the future, according to the American College of Obstetrics and Gynecology.
This is also a relatively new process, so there are no guarantees cord blood stored long term will still be usable and, because cord blood isn’t generally collected in large amounts, it may not be enough to treat your child if he gets sick as a teen or young adult. However, Cord Blood Registry officials say there’s no expected "expiration date" for cells stored properly. And researchers are working on ways to grow the blood cells, increasing the amount available.
But it's by no means a sure thing, say some experts. "Commercial cord blood banks should not represent the service they sell as ‘doing everything possible’ to ensure the health of children," says the official policy on cord blood banking at the American College of Obstetrics and Gynecology. "Parents and grandparents should not be made to feel guilty if they are not eager or able to invest these considerable sums in such a highly speculative venture."
As parents though, it’s hard to read a brochure for banking cord blood without wondering if this is what we should be doing.
"It is a very emotional sell and for some people, financially, it’s just not feasible," says Dr. Abbie Roth, an obstetrician and gynecologist at Northwestern Memorial Hospital in Chicago. "But in the long run, I think it’s a very good idea, so I present it to everyone, regardless of their financial situation. I present them with the options to donate or store the blood for private purposes and I don’t try to sway them either way."
Margaret Steele, Chicago mom of two, says it’s worth it. "I hemmed and hawed if I should do it, but the deciding factor was a friend who died of leukemia in her 30s. I thought, ‘If this were my child, I’d want to do anything possible,’ " says Steele. "To some people it sounds expensive and it’s a sensitive issue, because everybody’s children deserve a chance to conquer illness. But since I knew about it and could afford it, I figured I’d be crazy not to."
For public use
Chicago mom Maggie Wade agrees cord blood is important, but chose to donate her baby’s cord blood for others.
"It was such a beautiful gift that is so effortless," she says.
Donated cord blood becomes part of public banks operated through the National Marrow Donor Program. It’s easier to match a cord blood donation with a patient because, unlike bone marrow, blood-forming cells in cord blood have an immature immune system, says Alfred McQuarters, donor recruiter for the ITxMCS cord blood donation facility in Glenview.
State law prohibits hospitals from charging patients for collecting donated cord blood, which is transported, along with a sample of the mother’s blood, to the donation facility via the hospital’s blood bank. Once it arrives, the cord blood and mother’s blood are tested to ensure they are safe. Test results remain confidential and the blood is given an identification number, not the mother’s name, McQuarters says.
It’s possible—although unlikely, McQuarters says—that donated cord blood could be used for stem cell research. That happens only if the donation is too small or unsuitable for transplant, he says. Scientists use stem cells to research ways to treat spinal cord injuries, brain injuries, heart disease and diabetes.
Parents who donate their child’s cord blood should also understand it will not be saved for that child, McQuarters says. Donated cord blood is available to the public on a first-come, first-serve basis.
But if your child gets sick and his blood is still in the bank, you could get it back with a doctor’s prescription, though you would have to reimburse the bank for expenses.
"If it’s not available, hopefully someone else will have donated to match your child," McQuarters says. "The national goal is to have enough banked cord blood and registered marrow donors that someday everyone who needs cells will find a match."
Collecting the cord blood
If you do decide to bank or donate your child’s cord blood, the first step is to ask for a recommendation from your doctor, then contact the company.
The agency will send paperwork and a sterile collection kit you’ll take with you to the hospital. After the baby is born and the umbilical cord clamped, the doctor will insert a needle into the cord to collect the blood.
"After the baby was out, they did the procedure, so it didn’t hurt me or the baby at all," Nocita says.
Parents who store their child’s cord blood must get a courier to transport it to the private facility.
Both private and public cord blood banks follow the same procedure. The cord blood is screened, then stored cryogenically, using liquid nitrogen to store the cells at a very low temperature.
What the future holds for those stem cells is impossible to determine, but to Wade, donating her son’s cord blood was her gift to a sick child.
"It was the easiest thing in the world and it can have such a dramatic impact in the lives of others," Wade says. "Not just on the patient, but on their family too." Liz DeCarlo is a writer who lives in Darien with her husband and three children.
Aneesa Jessani sees another parent’s decision to donate her child’s umbilical cord blood to a public bank as a choice that saved her son, Amaan. That donated cord blood cured a disease that had kept Amaan in the hospital for most of his infancy.
Amaan was born June 23, 2004, and was a healthy baby until he was 3 months old. Then he began vomiting constantly, losing weight and having trouble breathing. Anessa took him from specialist to specialist, but nobody could diagnose his problem.
On Jan. 19, 2005, a check of Amaan’s oxygen level showed he was barely getting enough air. He was admitted to Loyola hospital’s intensive care unit and his parents were told he might not survive the night. Eight days later and still hanging in there, Amaan’s illness was finally given a name: severe combined immunodeficiency disease, also known as the "bubble boy" disease.
"I told them ‘No, you’re wrong,’ " Jessani remembers. "The odds are one in a million [to get this disease] and no one in our family had it."
Amaan’s only hope was a bone marrow transplant. He was transferred to Children’s Memorial Hospital to wait for a donor. But, since Amaan was only 8 months old, doctors thought he would be a perfect candidate for a cord blood transplant. A matching donation was found within 12 hours.
When it was time for the transplant, the doctors hooked up the blood while Jessani sat by his hospital bed. "It took only about 20 minutes and he slept through it. It was like a blood transfusion," Jessani says. The transplant changed Amaan’s blood type to that of his donor, but it also cured him of his illness.
"He’s going to be a completely normal child," Jessani says.
Jessani and her husband, Aly Rajabali, are so grateful for the gift of life given to their child that they started a nonprofit organization called An Answered Prayer to help those without insurance pay for lifesaving transplants. And they take every chance they get to tell others about donating cord blood.
"Without a cord donation, I wouldn’t have my son right now. This gave him new life," she says.
To arrange to donate your child’s cord blood to a public bank, contact (877) GIV-CORD.