Toddler, born with heart defect, now an advocate for child health issues

Born with a severe heart defect, 21-month-old Geno Mueller is not only beating the odds, he's become an advocate in hopes to help other children beat the odds too.

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CLEVELAND – At 21 weeks pregnant, Adrienne Mueller, was looking forward to welcoming another child to her growing family.

But, at a normal check-in with her obstetrician, Mueller and her husband, Bo, learned their baby boy had a severe heart defect.

A sonogram revealed the baby had a complete heart block and hydrops fetalis – a condition in which abnormal amounts of amniotic fluid build-up in various parts of the body because of heart problems.

Doctors told the couple their son, Geno, would have a less than ten percent chance of surviving after birth.

“There was a high likelihood that he would pass away, in utero, and be stillborn,” said Mueller. “We talked to our priest about baptism options. We had prepared ourselves for the worst outcome, but hoped for the best.”

Adrienne and Geno were closely monitored until he reached 29 weeks gestation.

Geno was born via C-section on October 13, 2017, and was immediately tended to by a team of specialists, including pediatric neonatologist Ibrahim Sammour, M.D., who worked feverishly to stabilize Geno in the minutes, hours and days after his birth.

“When a child like Geno is born with hydrops fetalis, the big issue is to get them to breathe and ventilate,” said Dr. Sammour. “Our main goal as a NICU team was to establish a good airway and oxygen delivery to his lungs. Geno was exactly where he needed to be to survive.”

Gerard Boyle, M.D., a pediatric cardiologist at Cleveland Clinic Children’s, also treated Geno.

After birth, Geno’s heart rate was in the 50 beats per minute range, when, according to Dr. Boyle, it should have been 120 to 130.

“When the rate is that slow, the heart muscle has to work harder to provide enough blood circulation, and that leads to breathing issues and other issues,” said Dr. Boyle.

But, with the help of a team of pediatric cardiologists, respiratory therapists, NICU nurses and other specialists, Geno slowly improved.

And two months later, a dual chamber pacemaker was surgically placed in Geno.

Today, 21-month-old Geno Mueller has beaten the odds.

“Geno is a happy baby, running around playing with his brothers, throwing food at the dog -Geno just keeps going,” said his father, Bo Mueller.

But Geno’s family and doctors know that the level of high-quality specialized care that was required to help Geno is not available everywhere.

Now, as a toddler, Geno is actually doing his part as an advocate for children’s health issues.

In June, Geno and his parents traveled to Washington, D.C. for the 2019 Speak Now for Kids Family Advocacy Day. Geno served as a representative of Cleveland Clinic Children’s at the event, which provides children’s hospital patients and families the opportunity to advocate with lawmakers on behalf of their hospitals and current child health issues.

Geno’s mother, Adrienne, said they are happy to share with others the incredible care that Geno received both before and after his birth.

“By meeting Geno, we hope it will give these leaders a real face to see and a real story to hear as they consider important decisions on children’s healthcare funding,” she said.

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