Who could look at the picture and not feel the baby with all the tubes, wires and sensors attached to her body?
There is a thick white bandage in the middle of his chest and an oxygen tube in his nose, held in place by adhesive gauze. The band is cut in the shape of hearts – one on each cheek – the only cheerful aspect of the image.
Obviously, Mikhael Perez Cevilla has been through something serious.
But another image, taken less than a week later, shows Mikhael looking like any happy, healthy baby, save for the slice of his chest where he underwent open-heart surgery. It is still held together with surgical glue.
“He’s been like this since he was born,” his aunt, Valerine Valdez, said of his pleasant nature. “It was never difficult.”
“The only time he cries is when he’s hungry or has a [dirty] diaper, that’s all,” said her mother, Rosa Cevilla Bonilla.
“He’s been a real blessing,” Valdez said. “We say it all the time, he’s our miracle baby boy.”
People also read…
She and Cevilla Bonilla are primary caretakers for Mikhael, who was born 13 months ago with not one, but two congenital heart defects. The surgery corrected the issues, allowing Mikhael to thrive and reach all of his developmental milestones as any baby would.
He doesn’t even need to take medication for the conditions that once threatened his life.
He did “fantastic,” said Dr. Keyur Mehta, a pediatric cardiologist who diagnosed Mikhael’s condition the day after he was born at Spotsylvania Regional Medical Center. “The family is extremely grateful for all the care their son has received, and I’m also grateful to the family for how everything has changed.”
‘A SECOND MOTHER’
Cevilla Bonilla and Valdez seem as close as sisters, but they aren’t related by blood. They are sisters-in-law. Valdez’s brother is the father of Mikhael and his big sister, Elliana, who is 5 years old.
When the relationship between Valdez’s brother and Cevilla Bonilla ended, Valdez chose to stand by Cevilla Bonilla for the sake of the children. Not everyone understood this decision.
“People are like, blood is blood, and I’m like, no, kids take priority over irresponsible adults,” she said. “We have to do the right thing for the children.”
As a result, Cevilla Bonilla spends much of her time with the Valdez family when not at her mother’s house. The two homes are less than 7 minutes apart in Spotsylvania County.
Valdez was there for Elliana’s birth and was a calming presence during the ordeal with Mikhael’s health.
“She is like a second mother”, Cevilla Bonilla.
Of course, neither knew what was happening, shortly after Mikhael was born, when hospital workers called the cardiologist, concerned about the “blue baby.”
So far, the newborn was doing well and there were no problems during the pregnancy. The mother and aunt noticed that Mikhael “was a little purple, but not something crazy,” Valdez said, and weren’t worried because he passed all the screenings after the birth.
Mehta was seeing patients at the Children’s Heart Institute clinic in Manassas and dropped everything when he got the call about Mikhael. He felt he didn’t have “the luxury of having time to wait.”
An echocardiogram, which provides insight into the movements of the heart, showed Mikhael had abnormal total pulmonary venous return, or TAPVR. It affects the four pulmonary veins which usually connect to the left atrium or upper chamber of the heart. Mikhael was not strapped in properly, which made it look like he had a “floating heart,” Valdez said.
With the disease, the oxygen-rich blood that is supposed to come from the lungs and go to the left atrium and then be pumped throughout the body ends up in the right atrium instead. All that blood in one place makes the heart work harder and gives the baby a blue-purple hue because the body isn’t getting enough oxygen-rich blood.
Babies with TAPVR typically have a second defect, a hole between the left and right atrium that allows mixed blood to reach the left atrium and be pumped to the rest of the body, according to the Centers for Disease Control and Prevention. All babies are born with this hole, but it usually closes within days or weeks, Mehta said.
In Mikhael’s case, the secondary problem – known as an atrial septal defect – was keeping the baby alive, even as the primary problem threatened to kill him. However, this situation was not sustainable as the hole in Mikhael’s heart eventually narrowed.
Mehta discussed the case with surgeons at Children’s National Hospital in Washington and they planned to operate when the baby was 6 months old.
Surgeons prefer to wait until the baby is a bit older and stronger and the veins — initially as small as coffee stirrers — are slightly larger, Mehta said. But the impact of the disease on the infant weighs in on the decision, as many cannot thrive due to their weakened state.
“A LITTLE TRAUMATIC”
That was hardly the case with the baby first nicknamed “Spiky” because of his black hair that apparently had its own look no matter how his mother tried to handle it. His appetite was never affected, even in the hours following the operation. The reason he needed his surgery earlier – at 2 months – was because the hole in his heart was closing and one side of his heart had become larger than the other.
The mother and aunt tried to put aside memories of that difficult time, when they had to hold a virtual baptism because there was no time for a traditional service.
Children’s National allowed the aunt to be there with the mother, and she told everything that was going on. His phone is filled with photos of Mikhael, before and after the operation, as well as business cards from the doctors who treated him and drawings they made to illustrate the heart defects.
Everyone they dealt with was wonderful, Valdez said, and helped in any way they could, but it was “still a bit traumatic” knowing the baby was about to have her breast cut open.
“Mom was struggling,” Valdez said.
When a nurse came to take the baby to surgery, Cevilla Bonilla’s worst fears came true.
“I felt like I almost died at that point,” the mother said.
“JUST A BLESSING”
Congenital heart defects are rare, accounting for only about 1% of total births, Mehta said. Mikhael’s problem is found in less than 2% of babies born with heart defects.
Then the mixed type of TAPVR, in which the pulmonary veins drain into several different areas, is even more unusual.
“It would probably be 1 in 100,000 or something like that,” Mehta said. “You can do the math. It’s pretty, pretty rare.”
But it seemed the threat was behind Mikhael right out of surgery. Her aunt and mother had learned that babies often remained sedated for up to 12 hours after a procedure and then had to wait a few more hours to eat. Mikhael was awake, smiling and enjoying a bottle of formula about four hours later.
“They weren’t ready for that,” Valdez said. “They even brought students to his room because the doctor was like, ‘we never have that.’ He ate, he peed, he pooped, he was awake, he wasn’t crying, he was like boom, boom, boom, boom, boom.
His hospitalization follows the same path. Some babies have to stay for three weeks or more, but Mikhael was able to go home after five days. Doctors told the family not to lift him by his arms when picking him up, but to lift him under his back to protect his chest.
It was the only precaution. Otherwise, the family had to treat him like any other baby.
A look at the game’s 13 months shows it’s anything but tricky.
He has recently started to walk and likes to playfully grab or hit everything that is close at hand: his mother’s phone, a journalist’s notebook, a photographer’s camera. There are several large and small dogs in the Valdez household, from a Chihuahua to a German Shepherd, and Mikhael frolics with them on the dog’s bed or walks after them to his favorite spot, Valerine Valdez’s office. . She and her husband, Kelvin, are retired Marines who work remotely for the Department of Homeland Security.
During Zoom meetings, Mikhael’s happy face often appears on the screen.
“Everyone who knows Mikhael loves Mikhael,” Kelvin Valdez said. “Everyone who has worn it, touched it, even people who have never seen it in person but saw it during my bible study group, it will appear in front of the camera from time to time, it is just a blessing. Every kid is, but seeing what he’s been through, you’d never think.
His voice trailed off for a moment, then he added that Mikhael suffered from the typical ailments of childhood: toothache, ear infection, fever. He receives a dose of medicine and is ready to go.
“He’s running around, becoming a terror again,” the uncle said.
Cathy Dyson: 540/374-5425