Family travels from Rome to Ann Arbor to save their daughter’s life

fetal cardiac intervention Ryan and Ellen Reedy had some challenges getting pregnant with their first child, so when they discovered in February 2013 that they were expecting, they were over the moon with joy. The two originally met in college.  After getting married, they moved outside of Rome, Italy, where Ryan serves as the Vice Director of their alma mater’s Rome Program. They planned to have their baby in Italy, a place they love.

Their plans took a dramatic turn in late June when a routine ultrasound found a spot on their baby’s heart. The doctor told them not to worry, it was probably just a calcification that would go away. Shortly after that, they had further ultrasounds and a fetal echocardiogram. This time the news was not good.

“The doctor said our baby had severe aortic stenosis (a severe narrowing of the outflow of the left side of the heart) that would impede the development of her left heart chambers and recommended we terminate the pregnancy. If not, he said our baby would die in utero, shortly after birth or live a life of severe handicaps,” recalls Ryan. “Terminating the pregnancy was not an option for us, so we started to research other possibilities.”

fetal valvuloplastyThe couple decided they needed to return to the United States for care. After investigating various options in the U.S., they chose C.S. Mott Children’s Hospital because of its expertise in complex congenital heart disease and the added benefit that Ryan’s parents live nearby, so they could stay with family.

“We were given the diagnosis in Italy on July 2 and on July 4, we were on a plane to Detroit,” says Ryan. “During our first appointment at Mott, the doctors confirmed the diagnosis of severe aortic stenosis, but they also gave us hope and treatment options.”

“In Italy, we were given only one option: terminate the pregnancy,” says Ellen. “From the moment we stepped into Mott, everyone was supportive and encouraging. They were there to support us with our decisions and help us achieve the best possible outcome for our child.”

At first, the Reedy’s team at the C.S. Mott Children’s Hospital Congenital Heart Center decided that their unborn daughter Caroline may not require fetal intervention. At a follow-up appointment, an echocardiogram showed that the stenosis was causing stress on her left ventricle and that if left untreated, Caroline may develop hypoplastic left heart syndrome, an underdevelopment of the left side of the heart.

“We decided the risks of fetal intervention were worth the benefit of preventing Caroline from developing additional heart problems that would require multiple surgeries after she was born,” says Ryan.

When Ellen was 29 weeks pregnant, the Fetal Cardiac Intervention team at Mott performed a fetal balloon valvuloplasty where a catheter was inserted into Caroline’s left ventricle and across the aortic valve to help open it up. The procedure was a success and Caroline’s left ventricle began to function more normally.

“By then, it was mid-August and I had to return to Italy for work. Ellen stayed back in Michigan with my parents so that Caroline’s condition could continue to be monitored,” says Ryan. “I took a leave of absence from work and returned to Michigan in October.”

At 39 weeks, Ellen’s labor was induced. After a long labor, Caroline was born late on October 23. They did an echocardiogram right away and decided to perform another valvuloplasty on Caroline’s aortic valve the following day. The procedure yielded good results.

“While her heart is not completely fixed, it is working much better than we could have hoped for given Caroline’s original diagnosis,” says Ryan. “Caroline remained at Mott for two weeks receiving follow-up treatment. Ellen and I stayed at the Ronald McDonald House, which was perfect because we could stay with Caroline all day and then get a good night’s sleep.”

severe aortic stenosisAfter two weeks, the Reedys took baby Caroline back to Ryan’s parents’ house and returned for monthly checkups with Dr. Carlen Gomez Fifer. She was doing so well, that the Reedy family was able to spend two weeks at Christmas in Northern Virginia visiting with Ellen’s family.

“We moved back to Italy in January. Dr. Fifer worked very hard to find us a cardiologist in Rome who could continue to monitor Caroline,” says Ryan. “We saw the Italian cardiologist a couple of weeks ago and because Caroline is doing so well, he said we do not need to return for four months.”

Caroline will most likely need an aortic valve replacement at some point in her life, but the could be in two years, five or 50. For now, she’s a happy, healthy 4-month-old baby enjoying life in Italy with her parents. With a dad who’s 6’3” and a mom who’s 6’2”, Caroline is following in their footsteps and is off the charts in length, measuring nearly 26 inches at her most recent checkup.

“She’s a joy…smiling, laughing, babbling,” says Ellen. “She’s only waking up once a night now, which is great. We’re thrilled to be back in Italy with our daughter…the one we were originally told had no chance to live a healthy life. With the help of everyone at Mott, she’s proven the Italian doctors wrong and is thriving.”

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best children's hospitalUniversity of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.