Brave Heart: Heart defects, multiple surgeries haven't stopped 2-month-old

Published on Tuesday, 11 February 2014 22:29 - Written by Faith Harper, fharper@tylerpaper.com

 

Two-month-old Camille Grace Gwartney has the heart of a warrior. Camille’s strawberry-sized heart underwent open-heart surgery when she was 13 days old to repair several heart defects, but there’s still a long path ahead for the baby. She is a patient at Medical City Children’s Hospital in Dallas.

“It’s very easy to worry and get down and ask, ‘why’ about every little thing. …” Camille’s mother Ashley Gwartney, of Jacksonville, said. “I feel very strongly that … every struggle and every trial is a blessing, and that God is using this situation. No matter if we had a bad day or a great day, she’s serving her purpose.”

“That’s how you have to look at it,” she said. “If you don’t, you would make yourself sick worrying.”

Coincidentally, this week is Congenital Heart Disease awareness week. According to the event’s website, Congenital Heart Disease affects about 40,000 babies like Camille a year.

Camille was born with four congenital heart defects, which are the most common birth defect in infants and the leading cause of birth defect-related deaths, according to the site. The majority of defects are minor and do not require surgery to correct.

Camille got a rough start to life, but hasn’t given up the fight.

Ms. Gwartney, 21, said Camille essentially has three chambers in her heart because tissue never formed to separate two of the four heart chambers. The pulmonary branch that connects to the lungs also never formed correctly. The artery takes oxygen-deficient blood to the lungs to be refilled with oxygen.

In the womb, Camille’s little body attempted to compensate for the malformed artery by creating small vessels between her lungs that connected to a main heart artery, but the vessels were too small to be life sustaining.

“The majority of them were the width of three hairs, and that’s not a very effective route for blood to get to your lungs,” Ms. Gwartney said.

At 13 days old, a Blalock-Taussig Stunt was placed in her heart to act as a temporary pulmonary branch, and the small vessels were pulled together and stretched out to create a pulmonary artery.

The shunt is intended to be temporary, and is a risky operation, Ms. Gwartney said.

“Of all her medications baby aspirin is her most critical medication to get daily. …” Ms. Gwartney said. “Blood cannot be a normal consistency going through that stunt — it has to be thin.”

Camille then went through a second surgery to put in a feeding tube and permanently tighten her esophagus, her mother said.

Because her body is so weak, Camille is given a special, prescription-only formula that is high in calories to help her gain weight, Ms. Gwartney said. Camille is also heavily monitored on how much formula and amount of calories her body can process.

Following the surgeries, Camille was allowed to go home, but was life-flighted back to Dallas three days later with lung and digestion problems.

Now the biggest hurdle is a large amount of fluid that has completely filled Camille’s right lung. There are also concerns of the fluid affecting her heart and fragile shunt.

“One little thing with them affects everything,” Ms. Gwartney said. “If they get a cold, its not like when a (healthy) baby gets a cold. That is what got us here, a little cold tuned into phenomena.”

Ms. Gwartney said Camille will not be “out of the woods,” for a while, but doctors are optimistic about her future. The family is expected to go home today, but Camille will have to have at least three more heart surgeries over her lifetime. The first surgery will be in the fall to place a separator in her heart’s chamber. She will have to have two more surgeries to replace the separator as she grows into adulthood.

The journey will be difficult, but Camille is expected to fully recover.

Ms. Gwartney said the support has also been overwhelming, from other heart baby parents in the hospital, its staff, the Jacksonville community and a network called of local parents called “Amazing Little Hearts.”

The fear never goes away, but Ms. Gwartney feels prepared for whatever comes, and her faith in God became stronger.

“My heart is full of so much joy because I feel like I’m much more appreciative and joyful in the smallest things,” she said. “I felt like her heart needed to be mended, but I felt like God was using this experience to mend my heart. It’s her heart that needed repairs, but it’s the people around her whose hearts are changing.”

A YouCaring.com account was set up by a friend to help the family with any medical expenses. To donate visit,http://www.youcaring.com/medical-fundraiser/caring-for-camille/134721