How I Survived … My Baby’s Heart Defect

Lori Cook of Ladera Ranch tells writer Rachel Powers about California’s newly mandated screening that probably saved her infant’s life

The oldest of my five children is 13, and Carlee, my youngest, was born last July. The pregnancy was normal, and there was nothing unusual about the delivery. Her evaluation was good; she seemed fine. Then they ran a pulse oximetry heart-defect screening test, something they’d just started doing nine days earlier because of a new state law.

The initial results indicated that the blood in her lower body had less oxygen than the blood in her upper body. They tested her two more times, and each time it was worse; the oxygen levels in her lower body kept dropping. They ordered an echocardiogram. Afterward, a cardiologist told us that something was just a little bit off, and they wanted to do a second echo 24 hours later. 

The second echo, when she was 48 hours old, made it clear that there was a problem. Within an hour, they came in, took Carlee, and told us her aorta was too narrow and wasn’t getting enough blood to the lower part of her body. If it hadn’t been for the test, she would have gotten very sick, very quickly. 

Handing her over for the surgery was horrible—she was only 6 days old—but I knew it had to happen or she wouldn’t get better. Dr. Joanne Starr performed the surgery at CHOC Children’s; she said it was the worst case she’d seen, and she’d done dozens of these surgeries. 

A few hours later, we were permitted to see Carlee in the cardiac unit, and it was the strangest thing: She looked like a wax baby. She didn’t look alive. She was pale, clammy, and puffy from the anesthesia, and there were many, many tubes and bandages. We were allowed to touch her if we were very careful, so we held her hand, talked to her, and rubbed her feet and legs. All in all, she was sedated for four days.

Once the breathing tube was out she recovered quickly, and after they removed her arterial lines, we could hold her again. But feeding her was an issue: She’d been on an IV, and because her stomach and intestines hadn’t been getting enough blood, doctors weren’t sure that her digestive system could handle food. She cried a lot—it’s really hard to hear your baby cry out of hunger. We had to be really cautious about introducing breast milk or formula. At first they gave her only a teaspoon every three hours, then two teaspoons, and then three. By Day 5 she was able to eat as much as she wanted. 

Now she’s completely healed. She’ll see a cardiologist every three to six months for the next year or two, but after that they’ll only need to see her once a year.

We had a lot of help from family, and we took it one day at a time. Prayer helped the most. We’re Latter-day Saints, and when you’re LDS you’re members of a ward. So between our faith, friends, neighbors, family, and everyone praying for us, sending us notes and meals, and offering to watch our older children, we knew all we had to do was take care of Carlee. 

Lifesaving Law
State legislation mandating that all infants be screened for Critical Congenital Heart Disease went into effect July 1. According to the CDC, about 300 infants with undetected CCHD are discharged from nurseries in the U.S. each year.

Photograph by Priscilla Iezzi

This article originally appeared in the January 2014 issue.

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