Last July, Jennifer Gutman told Toledo, Ohio’s 13 ABC Action News that the day doctors diagnosed her unborn son, Lucas, with hypoplastic left heart syndrome, also known as HLHS, was “the worst day of her life.” The diagnosis came during what Jennifer and her husband, Brian, thought would be a routine 22-week ultrasound. The startling news conjured up immediate fears for Lucas’ future, and painful memories for Jennifer. “My brother was also born with HLHS,” she tells us. “He passed away as an infant.”
Determined to not let Lucas meet that same fate, Jennifer’s sister-in-law, a physician, began reaching out to colleagues for advice. This led her to Timothy Nelson, M.D., Ph.D., a physician at Mayo’s Rochester campus. Dr. Nelson is the lead researcher on a clinical trial that aims to determine whether regenerative therapies like stem cell injections can “strengthen” the right side of the heart of HLHS patients enough to “delay — or even prevent — the need for heart transplants” later in life, according to MayoClinic.org.
After speaking with Dr. Nelson, the Gutmans decided to have stem cells from Lucas’ umbilical cord “banked” at Mayo Clinic in hopes that Lucas would be a candidate for the trial. A few months later, Dr. Nelson told the Gutmans that Lucas could be enrolled, but that there were no other children in the study at the time. “When I found out he’d be the only child in the trial I was scared,” Jennifer tells us. “But the research team never pressured us. They understood it was a big decision.” A big decision that Jennifer and Brian decided to move forward with. “Not just for Lucas, but for all HLHS kids,” she says. “We want to keep pushing forward to try and find the best outcomes for these kids.”
That push continued when Dr. Nelson injected the banked stem cells into the right side of Lucas’ heart this past December. And though there were a few post-procedure “bumps in the road,” Jennifer tells us that after a series of checkups, the initial results look promising for Lucas. “His heart function right now is about as good as it can be with HLHS, which is huge,” she says.
Though Jennifer says it could take “another 20 years” before they will know whether the procedure was enough to keep Lucas from needing a heart transplant, she tells us there’s one thing she and her husband “100 percent” sure of right now: That Dr. Nelson and his research team are doing everything they can to tip the odds in Lucas’ favor. “I’m so happy with Lucas’ care team at Mayo,” Jennifer says. “To have a team of people who go through all of this with you and who you can clearly see are all in with helping these kids — that means everything to us.”
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Tags: Dr. Timothy Nelson, hypoplastic left heart syndrome, Patient Stories
Sorry, but this story is false. My son Roman Rubeck was the first to have this done in 2013. I will not stand by and let him be forgotten. My son deserves the recognition. He went through hell and this is the thanks he gets. If you don’t believe me, ask Dr. Tim Nelson about Roman. Roman is the one who should be heralded. Give him his recognition. Sorry Gutman family.
Is this stem cell treatment research still being trialled? Im 21 weeks and baby has just been diagnosed with hlhs so we’re desperatly looking at treatment options. Thank you
@joclarke, please email the program at HLHS@mayo.edu to learn more. Thanks!