Warning: The following story may be disturbing to some readers. Reader discretion is advised.
Monday, April 15, the day Justin and I had been anxiously awaiting was finally here. This day we would find out if we were having Anna Katherine or William Franklin. It did not take long before the ultrasound tech told us, “It’s a Boy!” Through our excitement Justin and I did not realize that the ultrasound was taking longer than it should. The tech eventually told us that she could not get a good measurement of William’s heart. My doctor told us not to be concerned until we get a better image. At this point we were referred to Dr. Gonzalez, a prenatal diagnostician, at Brookwood in Birmingham.
For the first time in my life I didn’t worry. I spent the whole week planning for sweet little William. That Friday as Justin and I walked in to Dr. Gonzalez’s office it hit me. What if everything is not ok?
After over two hours of ultrasound footage Dr. Gonzalez gave us the news as gently as he could. He explained that William had a congenital heart defect. If the defect was genetic it would not be compatible with life. If the defect was structural we had surgical options we could explore. At our second appointment with Dr. Gonzalez we learned that the defect was structural, the genetic tests had come back negative. We asked if that was a good sign. He replied, “For your next baby.” At this time we were referred to a pediatric cardiologist.
For the next 20 weeks I saw an OB/GYN in Huntsville, an OB/GYN in Birmingham, a cardiologist in Huntsville, and a cardiologist in Birmingham. Through these visits we learned that William had several congenital heart defects (CHD): hypoplastic right heart syndrome (HRHS), levo -transposition of the great arteries (L-TGA), double outlet right ventricle (DORV), double inlet left ventricle (DILV), aortic stenosis and ventricular septal defect (VSD). Due to the severity of his diagnosis we decided it was best to deliver at UAB.
Wednesday, August 28 Justin and I made the drive to Birmingham, AL to welcome William into this world. Most parents feel anxious and excited about having their baby. Our anxiety was very different though. We knew as long as he was inside of me he was safe. The moment he took his first breath was the moment we were no longer guaranteed that our little boy would be okay.
Within hours of being born William’s heart rate elevated over 300 beats per minute. This is when reality hit that we did not have a healthy baby. Everything we had planned for was happening. But, all of our planning did not prepare us for the journey we were about to take.
William had his first open heart surgery at 6 days old. In these past four months he has endured 2 open heart surgeries (Norwood, Norwood take down & Palliative Arterial Switch), 2 heart surgeries (left pulmonary artery repair & aortic arch repair), pacemaker surgery, 2 ECMO runs, 2 heart catheterizations, 27+ full body volume blood transfusions, 90+ minute cardiac arrest, a g-tube surgery, and a g/j-tube conversion. William has beaten all odds so far. I know God is still in the miracle business because William is still here with us today.
Our journey took a sharp turn at three months when William had a cardiac arrest. He suffered a severe brain injury and suffered a stroke which affected the left side of his body. William has had chronic lung disease since his first set of surgeries. He is now in kidney failure. Every day, every breath is a fight for our little baby.
William has 2 more open heart surgeries in his future. With the brain injury and the unknown reason he is still in heart failure, the odds are not in his favor. We pray every day for William’s comfort and God’s will. We have been in the hospital every day and night of his four months watching William fight for every breath he has ever taken.
William has showed us more strength and courage than anyone we have ever met. People often ask Justin and I how we do it. The answer is very simple. If God grants us the privilege of one more day with him we will take it. As long as William is fighting we are right here fighting with him. When he is too weak or tired to fight, we fight for him and trust God to hold him.
You can read more about this precious little guy here.