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Posted over 5 years ago
To all the parents, grandparents, aunts, uncles, and relatives of sick little ones out there,
I am starting this topic because I did not see it on here before. My son, Dallas Jax Dohl, who is now two, was born with a Coarctation of the Aorta. What this means is that he has a narowing of the aorta so he was not getting blood flow to his lower limbs. He also has dextrocartia, which in lay mans terms means his heart is on the wrong side. The miracle of that is that his heart is facing the correct way and no other organs were affected by this disorder.
He had open heart surgery at two days old and I got the call that he was being life flighted to Fairfax Hospital from Reston Hospital at 0400, right as I was getting off duty. I raced to the hospital and waited hours in the NICU waiting room just to see him. When I finally got to see him he was all hooked up to tubes, breathing machines, ect. I couldn't help but cry. They couldn't even get blood from any veins in his arms or legs so they eventually had to take it from his head. Thankfully, my wife was still in Reston Hospital recovering from her c-section.
The thing I will never forgive myself for is that I knew there was something wrong from the moment I saw him. I will never know what it was that told me that there was something wrong but I knew, and I let it go because a nurse told me that his heavy breathing was normal. Once he recovered from his surgery, a month of sitting in hospital rooms next to a metal crib, we took him home and another problem arose.
Dallas was unable to keep food (formula) down. So like the over cautious parents me and my wife have become, we took him to the doctor. Tests concluded that the muscle around the exit of the stomach had grown to large and food could not exit the stomach but had to come back up. This required another surgery. The goal this time was to reduce the size of the muscle around the exit of the stomach. Obviously, it was a successful surgery and he has had no problems to date.
He may at one point in the near future have to have another procedure to expand the section of the aorta which is now just scar tissue and wont grow as he or his heart grows but due to the grace of god he has had stable heart pressures for two years and counting.
The odd thing is that these surgeries are becoming common place in my area, the doctor who preformed my sons surgery had 5 surgeries that week with the same condition and all born around the same time. (March) Strikes me as odd how heart conditions are becoming common place in little boys. But thank god all of those children were taken care of.
If any of you have similar stories or wish to share your experiences please feel free, I would be happy to listen to anything anyone has to say.
May your families stay safe and god bless.
Deputy Steven Dohl