Here’s how our story begins… After my labor didn’t progress naturally, Brighton Griffin McLane was born C-section on September 7, 2006. He was perfect! He was such a sweet, handsome boy, and as far as we knew just a normal, healthy newborn. There was a murmur that the doctor’s weren’t worried about, as it is common in many newborns until the extra artery closes in their heart. As new parents we were a little more concerned but just went with it as we were assured it was normal. He also had a random rapid panting while his lungs and diaphragm were adjusting to breathing. We weren’t sure if we were just being nervous parents, but we couldn’t shake the feeling that something was wrong.
After 3 days in the hospital, we were waiting for the final approval to take Brighton home. We had many visitors that day. A nurse noticed Brighton’s skin color was a little pale and recommended he be checked out in the nursery. The time dragged on and on with no news! It started to get dark out and we were anxious to get home. I continued to call the nursery to see what the hold up was. The blinds were pulled and I couldn’t even see my baby boy or show him to our family and friends who were stopping by to meet him. Finally after 5 hours of waiting a nurse came into the room and explained that Brighton’s murmur had gotten louder and after further examination, it would be a good idea to transport him to Primary Children’s Medical Center for further testing and imaging before they could tell us anymore.
I will admit I was nervous, but it really hit me when they asked me to sign the release for the transport. I saw him for the first time in many hours. He had lines coming out of him, and they were trying to get a line in his belly button before transporting him. That’s when it hit me that we were dealing with something much more than a little murmur or a precaution! I trembled as they wheeled his tiny little incubator out to the ambulance. My husband and I followed closely behind all the way to Primary’s Children from Orem, Utah. My Mom and sister were driving just behind us.
It took an hour or longer for them to stabilize him in the Neonatal Intensive Care Unit (NICU) before we could even see him! As soon as I was next to him, I was being asked to sign a release for a transfusion. WHAT? A transfusion? What is wrong with my baby?
We were told for some reason he was not receiving enough oxygenated blood through his body, and he was working very hard to stay alive. At 3 a.m. we were called into a conference room to discuss what the testing had concluded. Brighton was born with multiple congenital heart defects. Many of them were somewhat common defects, but we were told that the combination was unknown in medical history and would make a repair pretty complicated. We were told that without an open heart surgery our 4-day-old son would not survive. Those words still echo through my soul.
Brighton was diagnosed with a ventricular septal defect, an atrial septal defect, transposition of his great arteries, and a co-ark in his aorta. In other words, his arteries were switched sending oxygenated blood back to the lungs and blood that lacked oxygen out to his body. He had 2 large holes in his heart that had allowed the blood to mix, and that’s what had kept him alive the first few days. He also had a narrowing in his aorta causing restriction to the blood going out to his body.
How could this be? Nothing was detected in the ultrasound! We went from having a perfect healthy baby to having a very seriously ill baby fighting for his life and needing support to stay alive. We were lost! I had never felt so helpless! A mommy is supposed to be able to kiss away life’s troubles….. RIGHT?
As we got acquainted with the NICU nurses, they were so positive and helpful. I had wondered at one point if they were only being positive to give me a hope that would not come true. I questioned whether or not I would be taking Brighton home at all. I refused to go home and face that empty nursery we had all set up and waiting for him. I told my family that I would only face that nursery empty handed one time if I had to, but I could not go home until I knew if he was going to make it.
As Brighton’s strength gave out and he was put on full support, his surgery had to be done very soon. We got word to prepare for it that coming Friday. On Friday, September 15th, at only 8 days old, I walked along side of my son’s small hospital gurney to the O.R. doors. We were given time to give him “love” before they took him off to begin a very complicated open heart repair. I wasn’t sure if I was going to see my baby boy alive again. It was difficult, but had to be done. These doctors and nurses were so kind and gentle with us. They knew what they were doing, and we appreciated every effort they made to help us through this very difficult time. Dr. Hawkins is our hero!
After about an eternity the surgeon approached us in the waiting room. When he invited us into the conference room, I wasn’t sure if the news was going to be good or bad! Deep breath . . . We made it! He was doing great! We were given a piece of fabric in which a hole was cut out of. That missing piece is patching up a hole in Brighton’s tiny little heart. All of the repairs that they hoped to do, were able to be done in that surgery. Brighton was in the Pediatric Intensive Care Unit (PICU) recovering, and we were prepared to see many tubes and wires. Maybe not quite prepared for an entire room full of equipment hooked up to his little 6-lb. body, but it was helping him stay alive! My arms literally ached to hold my baby again.
Brighton was a champ! He healed so fast and so well! We were out of the PICU in 5 days and preparing to go home just days after that! I was treated so well and so gentle by the staff at Primary Children’s. It was a terrible, horrible, wonderful, magnificent experience. We will be eternally grateful to everyone who aided in Brighton’s heart repair. And when we were back in the ER a week later with a GI issue, we knew Brighton was in good hands. He had developed Pyloric Stenosis, after all his tiny body had gone through, and he needed a GI surgery to relieve is pyloris (a muscle controlling the exit of the stomach) to stop him from violently vomiting. After being in Primary Children’s another week, it began to feel more like home to me than home! I was more comfortable with the very capable staff there to look over Brighton, than I was at home.
We moved closer to downtown Salt Lake, and it’s a good thing because just 2 months later we found out that Brighton was going to need another open heart surgery. As heart breaking as that news was, I knew we could not be in a better hospital with more capable surgeons, doctors, and nurses. We were right where we needed to be. So, at 5 months old Brighton had a second open heart surgery to complete the repair started when he was first born. And again we could not have been more pleased with the outcome and the way not only we were taken care of as parents, but how wonderfully Brighton was taken care of.
When people ask me how I did it, how I made it through this all? I reply with:
“We were very fortunate to have the BEST working with our son! We will never take him anywhere else. God intended for this boy to be born. But, my heart goes out to all the Mommies and Daddies that don’t get to take their babies home. Brighton is a miracle without a doubt and has a purpose in this life. I know we were in the RIGHT place at the RIGHT time!”
We have faith in a higher power and his role in this miracle as well. Brighton is a healthy happy 5½ year old boy! You’d never know that he’d ever had problems unless you see his scar. He is getting ready to enter kindergarten this year! We couldn’t be more pleased at how things worked out. And he loves going back to Primary Children’s Heart Center for his cardiology appointments.
Thank you, Thank you for all that you do! And a special thank you to Dr. Hawkins, Dr. Cowley, Dr. Downey, and Dr. Everett for all that you do! You make miracles happen.
Story Lines is a feature on Play Ground telling personal stories and experiences about the hospital – written by the individual. If you would like to share your experience on the blog, please contact us.