DAVE ROSS

World’s smallest heart valve for infants trialed at Seattle Children’s Hospital

Mar 31, 2018, 8:08 PM | Updated: Apr 1, 2018, 1:50 pm

(Rutenberg family) (Rutenberg family) Dr. Jonathan Chen at Seattle Children's Hospital. (Seattle Children's)

Three years ago, Lee’or Rutenberg and his wife learned that their baby would be born with heart problems.

Within months of her birth, Sadie received the world’s smallest and only mechanical heart valve for newborns and infants at Seattle Children’s Hospital.

“(Sadie) was diagnosed at 20 weeks of pregnancy with an AV canal, it’s basically a defect where the center portion of her heart was missing and caused the valves to not grow correctly,” Rutenberg explained to KIRO Radio’s Dave Ross.

With a heart the size of a plum, it seems impossible to operate on, but Dr. Jonathan Chen said they routinely operate on newborn hearts the size of walnuts. The Abbott’s Masters HP 15mm rotatable mechanical heart valve is only about the size of a dime.

“This one you have to do under open heart procedure,” Chen said. “It’s a real operation. There are valves that you can put through the vein, but they’re about twice the size.”

Rutenberg explained that his daughter had been through two surgeries before she was big enough to undergo the trial and receive the new valve. She was nine months old in May 2015.

“We had to literally get her to a point where she could be on life support in the ICU before she could accept this valve,” Rutenberg said.

Surgery day was too overwhelming; Rutenberg spent most of his time trying to focus on walking around and checking out the hospital’s food. And then Dr. Chen came out of the operating room to update the Rutenbergs about their daughter.

“I remember as clear as it was yesterday,” Rutenberg recalls. “He came out and was very nonchalant about it. He just said, ‘Everything went great and let’s watch her take off now.’ I’ll never forget that moment.”

Sadie is now three years old. She has to take a blood thinner so the valve doesn’t clot. Contact sports are out, but Rutenberg says she’s doing great in dance class. They’re even talking about gymnastics at some point.

Dr. Chen says he’ll allow it.

“Surgeons are particularly liberal, I think about what we will allow, in our minds, kids to do,” Dr. Chen said. “The guardrails are put up by their cardiologists. I think part of it is that because of ‘making the donuts every day,’ we get very used to that. The reason we do these operations is so that everyone can live their lives to the fullest.”

And leave it up to Dave to ask about the cost of Sadie’s care. But Rutenberg reassured him that both he and Sadie’s mom are employed, so health care covers some of it.

With the surgeries and Sadie’s extensive stay in the cardiac ICU, mom and dad call her their million dollar baby. And the final cost will likely cost even more than a million dollars.

“She’s worth it.”

Dr. Chen said he and the other physicians at Children’s are ‘blind’ to the insurance status of their patients. They don’t have access to that information.

“We just treat whoever comes through the door,” Chen said. “There’s a philanthropic arm of the institution that’s dedicated to try to have funds to support kids who can’t pay for their own care. I came here from New York about five years ago and that was not the primary focus of the New York hospitals. It is the primary focus of Seattle Children’s. It really is an amazing institution.”

Abbott manufactures the valves, even though, as Rutenberg points out, there’s not a huge market.

“Sadie wouldn’t be alive today without the Abbots of the world,” Rutenberg said. “We’re grateful. We’re grateful to them for manufacturing this and making it available to kids.”

Sadie understands that Dr. Chen put a sparkle in her heart and loves to show people her scar, or her zipper, as the family refers to it.

“She knows that there’s something there and she’s acutely aware of the fact that there are going to be more surgeries,” Rutenberg said. “You would never know looking at her that she has been through what she’s been through. She’s just a happy little girl.”

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World’s smallest heart valve for infants trialed at Seattle Children’s Hospital