Stories about: Sitram Emani

Daughter of pro hockey player faces off against serious heart condition in Boston

Professional hockey players are known for physical toughness and durable spirit. As one example, the left-winger of the Columbus Blue Jackets, Nick Foligno along his wife Janelle, recently took their fight off the ice to ensure their infant daughter received the best heart surgery care in the country.

Milana

Milana’s heart valve condition was not discovered in utero, so she was born seemingly healthy to her loving parents. The first sign that Milana was not as perfect as she looked was 24 hours after birth when she failed the mandatory pulse oximetry test, which measures the oxygen level in the blood. The hospital followed up with an echocardiogram that revealed a severe mitral valve problem. Nick and Janelle were informed that their daughter would need surgery at some point in her young life.

The family was discharged in order for Milana to grow, but she struggled and a week later, she was readmitted to their local hospital. They managed her condition with medicines, trying to prolong her surgery until she got just a little bigger. Unfortunately, she wasn’t getting better and wasn’t eating enough to be healthy.

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The heart of innovation

Alexa Rand today

How do you know if you’re making the right medical decision for your child?

Nine years ago, Rosamaria Rand and her family faced this difficult question. While pregnant, Rosamaria learned that her daughter, Alexa, had a severe heart defect known as hypoplastic left heart syndrome (HLHS), where half the heart fails to develop properly. Doctors told the Rands that most children born with HLHS go through a process known as single ventricle palliation or “SVP”— a series of three surgeries to reconstruct the heart so it can function with a single working ventricle. They also let the Rands know that only about 50 percent of patients treated this way survive to adulthood.

Alexa had her initial procedure in utero (before she was born) at Boston Children’s. At this time, her parents learned about an alternative treatment method to SVP that can help patients with HLHS. Under development at Boston Children’s, this relatively new approach held the promise of helping children born with HLHS avoid long-term complications and improve their overall health.

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One patient’s story: our baby’s multiple heart defects

Roman was born with several heart defects, which required intensive medical attention and surgery

My husband Tim and I had been unsuccessfully trying for another baby for some time. Then, right around Mother’s Day, we got the present we’d been hoping for, a positive pregnancy test. The first few months were filled with joy and anticipation, but a scheduled ultrasound during my 19th week changed everything. The sonogram showed our son had a heart defect. As an intensive care nurse married to a physician, I knew how dangerous this could be. When they administered my amniocentesis— a test for genetic disorders that may be the cause of our baby’s heart condition—I was so numb that I didn’t even feel the needle go in me. The results showed no traceable cause; a twist of fate with no scientific reason.

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