Cody, born 2009

My husband and I first learned that our baby had a rare heart defect at my 20 week prenatal appointment. The doctors explained to us that our son may not live past a few months of age without surgical intervention, and they told us that our child would require multiple open-heart surgeries throughout his lifetime. The news was devastating. We turned to God for strength and courage, and to our surprise we were blessed with great joy!

 

We never expected the most frightening and uncertain time of our lives to result in so much peace and emotional strength. We prayed that our baby’s heart would be healed, but little did we know that God’s plan was to heal our own hearts.

 

Our son Cody was born at 41 weeks, weighing 8 pounds and 2 ounces on a chilly November morning in 2009.The doctors were impressed with how strong and healthy he looked. In the following days the diagnosis of his defect was confirmed, and preparations were made to treat Truncus Arteriosus.

 

Cody’s heart did not develop a separate pulmonary artery and aorta. Instead, a single vessel left his heart, delivering a mixture of oxygenated and deoxygenated blood to his lungs and the rest of his body. This single vessel spanned a hole in the wall of Cody’s heart that separates the left and right ventricle. It was this hole, or Ventricular Septal Defect, that enabled him to live outside the womb. After a week in the NICU in Austin, Cody was transported via ambulance to Texas Children’s Hospital in Houston, where his surgery took place a few days later.

 

Cody’s surgery took place during a rare Houston snow storm. After about eight hours in the operating room, the surgeon, Dr. Heinle, sat down to speak with us. He had repaired the VSD using Cody’s own pericardium, the tissue surrounding the heart. He also repaired the single vessel at the top of Cody’s heart by adding a homograft, which is tissue from a donor that gives Cody the pulmonary artery and valve that did he not develop on his own. Dr Heinle was pleased overall with the surgery, but did inform us that the narrow pulmonary arteries around Cody’s heart will require ongoing observation.

 

The days following were pretty hard, but Cody recovered steadily. It was really hard to see our baby hooked up to so many tubes and wires. His little body seemed to have lines and IVs coming from every direction. As the days past, the noises in his room gradually subsided, and machines were removed one by one from his room. After several days of letting Cody live unassisted, we were finally on our way home with our son for the first time. The doctors, nurses, and staff in Austin and Houston were extremely thorough and supportive. Everyone answered all of our questions, and Cody received excellent care.

 

After coming home for the first time in almost a month, we were finally ready

to begin our new life as a family of three. Cody had no complications from his procedure, and so far has shown no signs of developmental delays or disabilities. He currently attends preschool, and his teachers and classmates, parents are always surprised to learn that he ever went through anything like this.

 

At around six months old, Cody had to have a heart catheterization because of a narrow left pulmonary artery. When he was one, the doctors were still worried about that artery, and placed a stent to help increase the blood flow to his left lung. Another six months later, a second stent was placed to lengthen the first. And in January of 2012, just after Cody turned two, he needed his second open heart surgery. The initial homograft had become calcified, and the valve inside it was not functioning properly anymore, causing one side of the heart to work harder than the other. Again, Cody sailed through open heart surgery steadily and without complications. Since he was an older kid and able to tell us when things were scary or hurting, we worried that this second big surgery would be much harder than the first. Seeing your child unconscious immediately after surgery can be really scary. I had been worrying about that moment since I learned that he would need a second big surgery. Surprisingly, it was not as bad as I expected. Since he was much bigger than a newborn now, the multitude of tubes, wires, and sounds were not nearly as overwhelming. We were amazed at Cody’s bravery and patient compliance with the staff at Texas Children’s. Nurses were amazed at our two year olds calmness. Cody voluntarily held his arm out to have blood drawn and for his blood pressure to be taken. The surgery took place on a Monday and we were discharged the following Friday.

 

We had some rough days following our discharge. Bathing was scary because we couldn’t get the incision too wet, and Cody’s pain medicine tasted yucky so he didn’t like taking it. Cody was eager to play and run and get back to his usual routine, and he often became frustrated when his soreness limited his activities. I wondered how long it would be before we would all be able to play, roughhouse, and giggle on the floor with him again. It wasn’t long. He learned to limit himself physically on his own until he felt well enough to climb and jump off furniture again. By the time we saw our cardiologist for a follow up back home in Austin, Cody was climbing on everything in the exam room. The doctor was pleased with Cody’s condition and recovery, and even decided to take him off all medications.

 

As of today, thankfully, he hasn’t needed any procedures since that last trip to Houston. Cody is such a sweet and happy boy, and is very active and curious. He currently takes no medication, and he has no health or activity restrictions. We are so blessed that his condition does not directly affect his day-to-day activities. We know that the homograft in his heart will have to be replaced in the future, and that we may never be finished with surgeries, but we are optimistic. Cody has always been a happy, sweet and loving kid. He is eager to help out around the house and he has a great thirst for learning and playing.

 

God has given us the means to provide him with a great place to live, and he has a family full of aunts, uncles, cousins, and grandparents who love him dearly. I used to ask God why I had to have a baby with such a scary and complicated problem, but now my family and I are so very thankful for the whole experience. The process of fixing Cody’s broken heart ended up mending many of the hearts and relationships of our family.

 

Story by Cody’s mom, Meghan – Texas