CHD, TGA, ASO – a few small letters that have changed my life

My son has a Congenital Heart Defect (CHD). He was born in March, adorable, snuggly, starving, and seemingly perfect. It was a moment when nothing could possibly go wrong he was ten days old, gaining weight and loved a good cuddle. I gave him one last big snuggle and then left him and two of his sisters with grandma while I took the other sister on a mommy daughter date. I had no way of knowing that it was the last time I would hold him for another 2 weeks, and possibly forever. Life was perfect and wonderful, then I came home. The first thing I heard as I walked through the door was my frantic mother-in-law saying something was wrong with Jacob. I rushed into his room and there he was in his crib, eyes closed gasping for breath, moaning, limp, and non-responsive. I remember thinking at least he isn’t blue yet. I have never been so scared in my life. I called my pediatrician and talked with our incredible nurse and was told to bring him in straight away, but if he turned blue to go straight to the ER. I charged for the car and zipped over to the doctor’s office, only 2 minutes away. I grabbed my boy and charged in with the blanket on his head to keep the wind off, he must have turned blue in the two minutes it took to get there because the nurse snatched him out of my arms and went charging across the street to the hospital ER. We pounded on the ER door and before I knew it he was stripped on a table with doctors swarming around him responding to a code blue, wait it was my sons code blue! What was happening? Bewildered and shocked don’t even come close to the feelings that were charging in on me from every side. My pediatrician came in on his day off and my husband came rushing out from work. The Bishop from my ward (congregation) met us at the hospital. I’d like to say I was the picture of calmness and confidence and that I held it together so well, but I didn’t. I was a basket case, sobbing, scared and praying my heart out.
They stuck a breathing tube down his throat but nothing changed, and that is when they knew that he had a heart defect. We were grilled, any history of congenital heart defects, and they rattled off a few, to which we shock our heads blankly wondering what the jumble of words even meant. Then they were talking about transport to ICU in Emmanuel Children’s Hospital, and I knew we were in for a ride. They called for ambulance transport but when it arrived it was 5:30 p.m. and they were worried that with the traffic he wouldn’t survive the trip, in fact they weren’t sure if he even had another 20 minutes, so life flight was called in and my husband and I watched as the helicopter landed from our car and then we took off.
When we arrived at the hospital we raced up to the ICU and stopped dead in our tracks. There was a huge sign hanging on the ICU doors: STOP! EMERGENCY SURGERY IN PROGRESS! We knew it was our son and so we let them know that we were here and went to wait for a nurse to come explain what was happening. We were informed that his condition was called Transposition of the Great Arteries (TGA). His Aorta and Pulmonary arteries were switched and so the blood from the lungs with oxygen wasn’t making it out to his body it was just being sent back to his lungs. He was basically suffocating because he couldn’t get any air. They were doing a special procedure that would open a small hole in the wall of his heart that would allow the blood to mix and oxygenize to keep him alive until surgery. They had to do it in his room because he was close to death when he arrived and they didn’t have time to set up the lab. Well it worked and he stabilized a bit and we had to wait until his body recovered from the immense shock it had underwent. Doctors explained to us that his condition was correctable through a surgery call the Arterial Switch Operation (ASO) in which they do open heart surgery and switch his arteries and all the little connecting vessels that go with them. It’s amazing they can even do all that. Jacob had surgery on Easter Sunday. He had priesthood blessings, countless prayers and fasts from all denominations, and the service we received from members of the church was amazing. We witnessed so many miracles. We finally made it home after 2 weeks in the ICU, 1 week on the regular pediatric floor, and more scary moments of collapsed lungs and low oxygen levels. He is doing fine now. 30 years ago he wouldn’t have lived much beyond his teens with the operation they did then, and 10-20 years or so beyond that he just wouldn’t have lived. I thought my life would somehow return to normal, or as normal as it can get with four kids, but my life is now filled with doctors appointments and worries of development and lung problems. But I will choose every time to have these struggles and have my son than to have to bury him. I now know tons of families that are “Heart” families where before I knew maybe one. I thought heart defects were rare, but they are more common than childhood cancer. And I live everyday grateful that I have a son that I can hold and snuggle and kiss on his cute little head. I have come to realize that we never know when we might hold or hug someone for the last time, so I give my kids the biggest hug every day just in case. I’m sure they will love that as teenagers. 🙂 God is a God of miracles I see them every day.