Sunday, February 14, 2010
SICKLE CELL: A BATTLE FOR LIFE
That was two decades ago. Bhavana became pregnant with the couple’s first child, a daughter they named Hina. But a routine blood test – one given to all newborn babies in California – headed the family down a tortuous life-and-death path.
Ten days after Hina was born, the pediatrician called. Hina had sickle cell anemia.
“I thought there had to be a mistake,” Bhavana now recalls. “We thought that was mostly an African American disease.”
But the couple, who are both of Indian descent, learned that the hereditary disease also is found in people living in Mediterranean countries, such as Italy, as well as India. Neither Sanjay, nor Bhavana knew they carried genes that could combine to inflict their beautiful baby daughter with a potentially fatal disease.
“At first we were in denial,” Bhavana said, explaining that Hina appeared and behaved as a healthy, normal baby. But as Hina approached her first birthday, she had her first “pain crisis.” Her feet and hands swelled up. “It was very painful. All she did was cry. Then we knew it was real.”
Initially common pain relievers, such as Tylenol, gave baby Hina relief. But as pain crisis followed pain crisis, stronger drugs were administered.
“The pain became so severe,” Bhavana said, recalling staying day and night at her daughter’s side. Trips to hospital emergency rooms and to Children’s Hospital in Los Angeles began.
For the first three years, Hina’s treatment required frequent blood transfusions. But doctors at L.A. Children’s Hospital warned that these transfusions could cause a dangerous build-up of iron in the toddler’s system.
As the years passed and Hina’s condition worsened, Sanjay and Bhavana began investigating the option of a bone marrow transplant for their daughter. Her severe and repeated pain episodes and the availability of a matching donor would qualify her for the procedure.
Despite her medical struggles, Hina did well in school. New medicines provided periods when her pain was controlled and she could join in activities with classmates, including going to Camp KEEP, an outdoor environmental camp for area school children. As a teenager, she excelled in her studies at Stockdale High School. But medical complications in her senior year required her to leave the classroom and finish her studies with the help of at-home teachers. Still, she graduated with a 4.1 grade point average.
After a second consultation at Stanford Hospital, which indicated an 80 percent chance of success, a “family decision” was made in 2008 for Hina to have a bone marrow transplant at L.A. Children’s Hospital.
The procedure was successful and Hina’s sickle cell disease was believed to be cured, said Bhavana. But donor cells and Hina’s cells began fighting each other – a condition referred to as graft versus host disease.
Initially fearing the transplant had failed, Hina’s medical team, which expanded to include the staff at the Children’s Hospital in Seattle, Wash., once again began applying new therapies, which the family hopes will beat back the transplant threat. Hina and her family are now consulting with medical staff at the University of California, Los Angeles, hospital.
Sustaining her in this fight have been more than 80 units of platelets that Houchin Community Blood Bank donors in Bakersfield have provided.
“We owe her life to you,” Sanjay told platelet donors being honored at a recent Houchin dinner. “Because of you, we will see her get better.”
“Sometimes I ask, ‘Why me?’ But I know everyone faces bumps in the road,” Hina told donors. “I try to keep positive mentally and have hope. I have faith in God. … Finding my match for platelets is difficult. Houchin has been able to do that.”
Some of the donors honored at the Houchin dinner had given up to 630 units of platelets, a component critical to blood clotting. Donating platelets differs from donating whole blood in that the procedure takes longer. Based on medical considerations, fewer people are qualified to donate.
“Giving platelets to someone you don’t know is a sterling example of selflessness,” Sanjay told Houchin donors.
Just days after Hina and her family spoke to donors, Hina was admitted to Bakersfield Memorial Hospital, where once again she relied on platelets from Houchin to stay alive and fight off an infection. She has returned home to continue her recovery.
While Hina fights to keep her bone marrow transplant, she is taking online college courses through Bakersfield College. The 19-year-old honors student has been accepted into the University of Pacific’s pharmacy program. The university has promised to keep its admission offer open until Hina recovers.
She will be following in her parent’s professional footsteps, although Bhavana placed her career on hold after her daughter’s diagnosis. “If you have a child with sickle cell, you become a stay-at-home mom, you become an advocate, staying on top of her treatment,” Bhavana said, offering no regrets for her career decision.
And her advice for other parents: “Especially if you are African American, always test yourself. Otherwise, you can pass this along to your offspring.”
Following genetic testing, Sanjay and Bhavana had a second daughter, Amie, who is now 16 years old and a student at Stockdale High School. Bhavana said Amie carries her mother’s gene for the disease, but not her father’s. While Amie does not have sickle cell disease, Bhavana says her daughter will need to consider the risks when she marries and has children.
To learn more about sickle cell disease go to www.sicklecelldisease.org
This article written by Dianne Hardisty appeared first in The Bakersfield Californian on Feb. 14, 2010.