A premature baby, who had to be ventilated and resuscitated twice after birth due to heart failure, has left hospital for the first time in 16 months and is on the road to recovery thanks to a rare operation pioneered by a Saudi heart surgeon.
DJ Edmonds was born about three months premature in January 2021 at a hospital in Ohio in the US, after his twin died in utero.
Doctors discovered a rare heart defect which could have led to multiple organ defects, but after undergoing a novel surgery led by Hani Najm, a Saudi pediatric and congenital heart surgeon practicing at Cleveland Clinic Children’s hospital in the US, DJ is now at home for the first time with his parents.
DJ became the youngest ever patient to undergo a rare cardiac surgical procedure developed by the Saudi surgeon called a ventricular switch.
This is a novel method for treating a double-outlet right ventricle (DORV) – a rare, complex and life-threatening congenital heart defect that prevents normal blood flow from the heart’s two lower chambers to the lungs and other parts of the body.
It occurs because both of the two major arteries are connected to the wrong chamber with a remote communication between the ventricles.
Typically, patients with DORV have a ventricular septal defect (VSD) that also needs repair. This is commonly situated under one of the major arteries.
In rare cases such as DJ’s, the VSD is remote, preventing a standard repair. In the presence of a remote VSD, traditionally, these conditions are treated in a series of three heart surgeries. These procedures culminate to a univentricular repair. However, for DJ and others with complex cases of DORV, this classic approach may result in higher risk of heart problems later in life that can involve multi-organ dysfunction.
“The ventricular switch procedure switches the right ventricle and the left ventricle,” explains Dr. Najm, who is chair of pediatric and adult congenital heart surgery at Cleveland Clinic. “So, instead of the left ventricle pumping to the body, as it normally does, we have it pump to the lungs. And the right ventricle, instead of pumping to the lungs, pumps to the rest of the body. We’ve found it to be quite effective in patients, like DJ, whose hearts have multiple abnormal connections.”
DJ was born about 12 weeks premature. In addition to complications associated with a premature birth, doctors discovered a heart murmur, and within days, transferred him to another facility.
There, as his mother, Danielle Edmonds recalls, DJ was ventilated to enable him to breathe and twice had to be resuscitated when his heart failed.
Danielle sought out additional medical opinions – which led her to Dr. Najm, who at that time had only performed the ventricular switch on five previous patients.
Using a 3D-printed model of DJ’s heart, Dr. Najm and his team identified DJ would be an ideal candidate for the ventricular switch. He informed DJ’s parents it was a newer procedure he hadn’t yet performed on a patient so young.
“When I talk to families, I’m confident in what I’m doing. I know it’s not easy to hear that we’re suggesting trying something new on their child. But I present the facts and tell them exactly what we’re going to do,” the surgeon said. “It can be a tricky situation for parents. But for DJ, they understood his expected outcome would be better than if we used the standard procedures.”
Dr. Najm and his team completed the surgery without complications. Danielle immediately noticed her baby’s color had improved and he was more responsive.
His heart and other complications from being born prematurely required DJ to remain hospitalized. He then spent 140 consecutive days undergoing extensive rehab at Cleveland Clinic Children’s Hospital for Rehabilitation.
In May 2022, 16 months after his birth, he was finally healthy enough to go home. His parents see improvements every day.
“He is growing tremendously. He’s 21 pounds now,” says Danielle. “He’s moving around, standing, eating actual solid food instead of eating through a tube. He’s moving forward in the right direction.”
DJ’s father, DeAngelo Blake Sr, is delighted that when he comes home from work, DJ always greets him with a big smile: “His smile has such an energy. If this kid can go through this much and still smile, then why can’t we?”
Danielle added: “When he was born, I was told he probably would not live a normal life, but look at him now. We’re looking forward to seeing what he’ll accomplish next. Nothing is out of his reach.”
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