“I have never seen reported or witnessed myself
a baby who survived with this type of malformation”
—Dr. Van Reid Bohman, Desert Perinatal
Ultrasound of fetus in utero.
Baby Ezekiel at 11 months, smiling and healthy.
They aren’t Jewish, but Destiny and David Canseco named their son Ezekiel – Hebrew for “God strengthens.”
Never has a name been so fitting. To his mom and dad, and others too, Ezekiel is an angel on Earth. It’s the only plausible explanation for why he’s still here, in defiance of medical science. And when you look at him laughing and smiling, he looks like any other cherubic 11-month-old. He’s not.
“I have never seen reported or witnessed myself a baby who survived with this type of malformation,” says Dr. Van Reid Bohman of Desert Perinatal Associates. “In my 30 years I have treated six cases like this, all of them were fatal.”
Trouble started for the Cansecos at their six-week ultrasound appointment. Doctors saw abnormalities. They thought it might be Down syndrome. It wasn’t. It was Pentalogy of Cantrell, a condition in which organs develop outside the fetus’ body. Extremely rare, it is usually fatal. Ezekiel’s heart, liver and intestines were growing outside his chest cavity.
“We were devastated,” says Destiny. “We kept thinking, ‘Why us?’”
But Bohman saw a flicker of hope, a possibility that the Cansecos’ baby could survive.
“When I looked at Baby Ezekiel, I saw very distinct deviations from the typical Pentalogy of Cantrell case,” Bohman says. “I thought to myself: ‘this one is different. I think we can do better than throwing in the towel.’”
On a fetal ultrasound, a Pentalogy of Cantrell baby has a heart that stands out like a point. Bohman noticed that Baby Ezekiel’s heart was at a 45-degree-, not a 90-degree angle. And instead of being completely outside the chest cavity, it was two-thirds out.
Bohman believed he had a shot to save the baby. And he asked the family to join him in his crusade.
Dr. Bohman with the Canseco family just days after Ezekiel was born. Bohman always believed Ezekiel could beat the odds.
“Dr. Bohman laid out the options,” Destiny says. “He gave us a choice — to continue or to terminate. I kept feeling that if I keep this baby I am being selfish because I want to meet him. If he made it to delivery, we had no idea how long he would survive once he was born. Maybe a week, maybe a day, maybe an hour.”
Bohman consulted a pediatric cardiologist and a pediatric cardiothoracic surgeon to see if they agreed with his reasoning.
“I said to them, ‘does this make sense to you?’ They all agreed with my thinking,” he says. “We collectively felt like we could save this child.”
The Cansecos weren’t quite sure how to process this newfound optimism. Their emotions were all over the place – a jumble of joy, fear and confusion.
“We went through all of the stages,” says Destiny. “We bought all of the baby stuff, then sold everything when we thought we would lose him. We even visited a funeral home.”
“We were trying to prepare ourselves,” explains David. “If you Google Pentalogy of Cantrell, the pictures are frightening.”
The Cansecos decided to keep the pregnancy. Destiny battled depression but stayed strong for her husband, her 3-year-old son Vincent and her unborn baby boy. In Bohman she had more than a doctor. She had a confidant.
“Dr. Bohman was like family,” she says. “He was always there for me as a true partner and friend.”
“We had a unique connection developed by thinking outside the box,” says Bohman. “In my experience, these pregnancies end with termination. But together with the family and my pediatric physician colleagues we went out on a limb to try to save this child.”
Destiny was a bundle of nerves. “I had panic attacks. I couldn’t breathe. I was terrified the whole time,” she says.
Bohman was anxious, too.
“Every step of the way we were dotting our i’s and crossing our t’s, making sure we covered everything,” says Bohman. “I was apprehensive, too, realizing that I could be wrong.”
Delivery day came at 37 weeks.
For Destiny, all her fears were erased in a single moment.
“When I heard him cry, I just knew he was going to be fine,” she says, eyes welling with tears.
“I walked over to where they were cleaning him up. His organs were exposed but I looked right into his eyes,” says David. “They were wide open and he was so alert.”
The nurses wrapped Ezekiel up and handed him to his parents to cuddle.
Within seconds, 20 doctors swarmed around the newborn, tending to his every need. Before delivery, the medical team was nervous, too. They were glad to see he had a little skin covering his heart. It would help in future surgeries.
After spending two months in the neonatal ICU, Ezekiel went home with his family. Vincent is very protective of his little brother.
“He watches out for him,” says Destiny. “He doesn’t like anyone touching Ezekiel. He understands that his brother has an ‘ouchy’ on his chest.”
After a slow start, Ezekiel is hitting all of his milestones. He’s learning to walk, which his parents find thrilling and terrifying.
“We have to keep an eye on him at all times,” says David. “Because his heart is still unprotected.”
Ezekiel has had two surgeries to stretch the skin to cover his heart. In the future, he’ll need more. Most likely he’ll never play sports. But he’s already beaten the longest of odds.
“The nurses and doctors treating him said that no baby they have seen has ever had this condition and lived,” Destiny says, unable to hide her pride.
Ezekiel has inspired a similar emotion in Bohman.
“I am filled with pride and joy when I see this little rascal,” he says. “We talk and snuggle. Am I thrilled? Yes! Am I surprised? No! I always believed he could live.”
Ezekiel’s dad has no intention of selling his second son short.
“Our dreams for him are the same as they are for Vincent,” says David. “We want him to get married, have a career and be whatever he wants to be.”
“I do worry about what will happen to him when he goes to school,” says Destiny. “I won’t be there to protect him. I don’t want him to feel different.”
For Bohman, babies like Ezekiel remind him of why he chose this path as his life’s work.
“I have a dozen or so cases in my 30 years where the literature says it can’t be done and we have saved the child,” he says. “It is what I live for and why I went into the field of perinatology.”
Ezekiel, seemingly strengthened by God indeed, has given strength to those around him.
“He has taught me to never give up,” says Destiny. “There is always a hope.”
“I feel like no matter (the) condition the baby has you should keep going,” David says. “Every baby deserves a chance. We are thankful for every day we have with Ezekiel.”