By her first birthday Hannah Boehme had experienced a lifetime’s worth of heart problems. Born with a defective heart, by 7 months of age, a mounting series of medical problems prompted her doctors to predict she had a few months to live.
But shortly after turning one, Hannah received a gift: a life-saving heart transplant. The procedure gave her a chance at a normal, healthy childhood.
Now 14, Hannah has started to give a gift of her own – she’s giving back to medical discovery. She is participating in an NIH clinical trial aiming to improve the safety of follow-up care critical for heart transplant patients like her.
Hannah’s clinical trial involves work by Michael Hansen, Ph.D., a National Heart, Lung, and Blood Institute (NHLBI) researcher. Dr. Hansen was part of a team recognized this year with an Orloff Award for its innovative work with Magnetic Resonance Imaging (MRI.)
Dr. Hansen, part of the NHLBI Laboratory of Imaging Technology, is helping create technology to allow the use of MRI to perform follow up surgical procedures for transplant recipients. Robert Lederman, M.D., a senior investigator who is part of the NHLBI Cardiovascular Intervention Program, and Kanishka Ratnayaka, M.D., a researcher who splits time between NHLBI and the Rady Children’s Hospital in San Diego, are also among the team members involved in the award-winning effort.
“I know I have teams of doctors that are very dedicated to this study and I think that is important for progress, for me, and the other kids that may face what I have,” Hannah said of being part of this clinical trial. “When I see how excited these doctors are, it takes a lot of the worry away from me because I know I am in good hands.”
Her journey to joining a clinical trial started before she was born.
Shortly before Lynda Boehme and her husband Chris welcomed their daughter into the world in 2001, the couple learned something was wrong with Hannah’s heart. Doctors told the parents that Hannah had a condition called complete heart block, a problem with the electrical signals necessary for the heart to function properly.
“It was devastating news for us,” said Lynda. “It just wasn’t on our radar.”
Soon after Hannah was born in Seattle, the health problems began to mount. At three months, she needed a pacemaker. The device was effective for a while, but then at seven months, Hannah was diagnosed with cardiomyopathy, a disease of the heart muscle. Doctors told Hannah’s family that without drastic action, she had a few months to live. At 13 months old she and her family rushed to Johns Hopkins University in Baltimore for a heart transplant. The surgery, performed by Janet Scheel, M.D., was a success.
Like most heart transplant recipients, Hannah needed periodic follow-up procedures. Doctors performed catheterizations to probe inside her heart, looking for potential signs of trouble. Like most surgeons doing this kind of operation, they used X-rays to guide their tools. As a result, Hannah absorbed relatively high levels of radiation during each procedure.
In 2015, Hannah and her family reunited with Scheel, the transplant surgeon now working at the Children’s National Medical Center in Washington, DC. Dr. Scheel mentioned the NIH trial using MRI Imaging instead of X-rays. Joshua Kanter, M.D., a colleague of Scheel’s at Children’s National Medical Center, was also involved in the MRI research effort. NHLBI and Children’s National Medical Center have a partnership seeking to advance cardiac imaging technology through the use of MRI.
“We really want to get rid of X-ray radiation. For pediatric patients, this is really important,” explained Dr. Hansen. “They have multiple procedures and there is an accumulated risk over their lifetime associated with those procedures.”
Over the years the experimental technique has helped reduce the amount of X-ray radiation that Hannah receives. Dr. Hansen now hopes the technology can be applied more broadly to surgical procedures involving other parts of the body.
“The great thing about this is that it is radiation-free, and we think in the future that there will be great opportunities to do novel procedures we couldn’t do any other way,” said Dr. Hansen.
Hannah and her family, who now live in Virginia Beach, Virginia, said they are excited that participating in clinical trials like this one might help make life easier for other kids who get heart transplants.
“We are over the moon to be involved in this kind of cutting edge science,“ Lynda said. “I have always seen a bright future for Hannah, but this just gives me such hope.”
“Being a heart transplant recipient sounds overwhelming but I have learned to accept it,” Hannah said. “For the most part, I'm just like most 14 year olds with the exception of countless doctor visits and blood tests. But that doesn't bother me, because I know that one day, science will evolve and wonderful things will come.”