Baby Rowan Adams was born on May 17 and everything seemed “totally normal,” according to her mom.
David and Kristina Adams, of Beaver Dam, brought their baby girl home but just two days later they could tell that something was wrong.
“She wasn’t taking her bottle and she was acting lethargic and breathing heavy,” Kristina said.
The couple thought it was gas or constipation and attempted to do some gas-relieving exercises for a couple of hours but she still wasn’t getting any better. They noticed that Rowan’s skin felt cold. Her temperature was 94 degrees.
“We saw that she was at 94 degrees, she wasn’t eating and still breathing really heavy. At this point, she wasn’t even responding to noise and there wasn’t anything we could do to help her. That’s when we called the pediatric triage line,” the first-time mom said.
They were told to call 911 for an ambulance because there was obviously something wrong.
Once they arrived at Owensboro Health Regional Hospital, where Rowan was born, the hospital called Norton Children’s Hospital almost immediately to transport the baby, Kristina said.
During that time OHRM continued to work with her. Kristina said the hospital originally thought it might be some type of infection and was treating her with antibiotics.
“We had no clue that anything was wrong with her heart,” Kristina said.
Once she arrived at Norton’s doctors soon discovered that she had some type of issue with her heart.
“During transport, they recognized really quickly something was wrong and due to her age, they suspected her heart,” said Dr. Natalie Henderson, pediatric critical care medicine specialist with Norton Children’s Critical Care. “She was so sick the goal was to get her to the intensive care unit.”
Rowan underwent an echocaridogram and an ultrasound of the heart. Once she was admitted to the Jennifer Lawrence Cardiac Intensive Care Unit, specialists discovered she had an undiagnosed, rare heart condition called interrupted aortic arch.
The aorta is the large vessel that comes off of the heart that takes blood with oxygen in it to your body. An interrupted aortic arch means the aorta didn’t completely form and a gap was left causing a lack of blood flow in the body.
According to information provided by Norton’s by the National Health Institute, this occurs in about two of every 100,000 live births.
“Rowan’s (aorta) didn’t connect. So she was dependent on the ductus arteriosus. We all have that in the womb and then it naturally closes once you deliver. So hers closed a few days after she was born and that’s fine in a normal heart. But, when hers closed it meant the rest of her body wasn’t getting the good blood that it needed,” Dr. Henderson said.
When Rowan’s ductus arteriosus closed that’s when she became so sick. It caused the stomach and intestines not to get enough blood which is why the baby didn’t want to eat, the kidneys began to shut down and she was lethargic because her brain wasn’t getting enough blood.
Doctors started Rowan on a medication that temporarily opens this ductus back up and restores blood flow.
“That was the hope – that we could do that and let those organs recover and then perform surgery,” Dr. Henderson said. “Because if you take her to surgery when those organs are unhappy then recovery can be longer.”
She was also quickly put on a vent and given sedation medication to let her body relax and recover. The ductus arteriosus reopened within a few hours and her organs started to get blood flow again.
Dr. Bahaaldin Alsoufi performed the surgery on May 27. It lasted between four to five hours.
“She was very sick. If her parents had not recognized something was wrong and the (Owensboro) hospital hadn’t done a good job stabilizing her, she would have died.”
Since the surgery, Kristina said Rowan has been doing “amazingly well.” After a month’s stay in the hospital, she is at home and thriving.
“She’s been really great. She’s still growing really well and gaining weight amazingly well,” Kristina said as Rowan had lost a pound during the ordeal. “She’s really happy – a really happy baby. You wouldn’t even realize that she was a heart patient and went through such an intense surgery … She’s doing all the normal baby things. Who is to say she will reach all of her milestones on time, but right now she has been able to reach all of them on time or close to on time.”
Rowan has seen her share of doctors following the surgery including cardiologists, nephrologists, dietitians, and pediatricians. She is now seeing the cardiologist and pediatrician undergoing check-ups and echos to make sure nothing is closing up or that nothing has gone wrong post-op. As long as she continues to improve, her appointments will become less frequent.
She will have to see a cardiologist once a year as long as everything continues normally.
She is currently on some blood pressure medicine but with her next visit, Kristina hopes that she will be able to come off of it.
“There’s always a risk when they get older that (these heart patients) might have to have a stent put in or something like that,” Kristi said. “It’s fairly likely she will have to have some type of treatment or blood pressure meds in the future but other than that, she won’t have to worry about anything.”
Dr. Henderson agreed that Rowan should have a heart-healthy childhood.
“In a perfect world she will be followed by cardiology and hopefully will not need any intervention,” she said. “However, it is a cardiac surgery so there is a risk that she might in the future. The hope is that she will have a normal childhood and normal life. She will be followed very, very closely in her first year.”
Both Kristina and Dr. Henderson urge parents to trust their intuition and if they think there is something wrong, they shouldn’t hesitate to seek medical attention.
“They knew something wasn’t right,” Dr. Henderson said. “They just weren’t sure what. So following your intuition is never wrong. If parents suspect something is wrong they should trust themselves. If something just feels off call.”
“It happened very quickly, her decline and it came out of nowhere for us so I would just reiterate that you really can’t be prepared for everything as parents. We thought we were. You never think that your child is going to be a heart patient. If there’s something that causes you concern as a parent it does not hurt to call and get a medical professional’s opinion. Had we not, she would not be here.”
