“You never think you’re going to have a child with a broken heart,” says Karrie Carlsen of Chesapeake, Va., whose daughter Michaela was born with Tetrology of Fallot and aortic stenosis.
According to Carlsen, there was never a sign of trouble within her pregnancy and even even after birth—a C-section at Chesapeake General—Michaela was just a little blue; nothing out of the ordinary.
She placed a kiss on Michaela after delivery and the newborn was whisked away to the nursery. The blueness—a sign of low oxygen levels—didn’t improve. Doctors did an X-ray and an EKG. Michaela had congenital heart defects. She was rushed to Children’s Hospital of The King’s Daughters within 15 minutes of diagnosis.
Carlsen requested an emergency release so that she could accompany her daughter. Once granted, she met with her in-laws and children to tell them the news about Michaela.
She stayed at CHKD for a week nursing her daughter when she could and resting on the couches in the waiting room. Upon released, the family was instructed to bring the infant right back should she turn blue around her lips or nail beds.
“I didn’t sleep a lot,” admits Carlsen. “I was so afraid.”
She was forced to quit her job so she could tend to her baby. She was also under strict order to make sure Michaela didn’t cry or laugh, activities that would raise her blood pressure. So any time the tot felt an ounce of discomfort, she was nursed.
“I made her a chunky little baby,” jokes Carlsen.
The family continued with monthly echocardiograms and after 3-1/2 months, Michaela’s oxygen saturation levels were sustained in the 80s (normal levels for infants is 92-100) making surgery now a possibility. Unfortunately, her coronary artery obstructed that chance and the risk outweighed the reward.
She was sent home again.
At 7-months-old, her oxygen saturation was sustained in the 70s. Surgery had to happen and the family began exploring options.
They were sent to Children’s Hospital of Philadelphia, but their insurance company didn’t want to cooperate. Despite CHoP and CHKDs attempts to convince the carrier of the necessity of the procedure, it wasn’t approved.
Two months later, Michaela was able to undergo open-heart surgery at Duke University Medical Center in Durham, N.C.—an in-network hospital. And for the first time in her life she was able to laugh and cry without consequence. While the surgery was successful, Michaela was left with hole in her heart.
While in the NICU, her oxygen levels dropped again and she needed to be fed through a nasogastric tube for 10 days. Since Michaela refused to bottle feed, Carlsen had to learn to feed her with an NG tube before leaving the hospital. Luckily for Carlsen, the moment they got home, the baby decided to take the bottle.
“I was happy that we got to be at home, pull the NG tube and not go to the occupational therapist,” says Carlsen.
Her husband, Bruce, was thrilled. He could finally play with and tickle his little girl.
Within 2-3 months, Michaela was off of her eight medications and was seeing the cardiologist annually. At her three-year check up, even the hole in her heart was gone.
“I asked the technician and he searched for 20 minutes. It was gone. No medical explanation. The plan was to patch the hole at her next surgery, but it had closed on its own. We were completely amazed,” says Carlsen.
She has since had one additional open-heart surgery in which she had a cow valve placed in her heart to eliminate the need for future procedures until adulthood. Michaela can enjoy life and play as hard as any other child her age now, which is 10. “The only thing she can’t do is play tackle football,” Bruce playfully admits.
Like others who have fought through congenital heart challenges, the Carlsen’s have used it to add meaning to their lives. “It’s humbled us,” says Bruce. “Made us realize that there is more to life than stuff.”
Michaela, who accepts and plays the cards dealt to her, has a refreshing prespective that’s as mature and it is wise: “I’m glad that God gave me a broken heart because I can help other people like me.
“I want to be an example to other children that they can have a normal life even if they have a broken heart. They can run, jump and play the same as everyone else. They can still have fun and enjoy life.”
Donate to or volunteer with the American Heart Association at heart.org.