Thomas has Tetralogy of Fallot (ToF) and Jonathan has Transposition of the Great arteries (TGA), Double Outlet Right Ventrical (DORV), and Pulmonary Atresia
It is hard enough to imagine having one child with CHD(s) but imagine if you are that parent who has two children with CHD(s) not only two children with CHD but two children with two different type of CHD(s).
Here is Naomi’s story:
I’ve been sitting here trying to think about how I feel or what I feel and I am trying to come up with the right words for it. I feel that I have been dealt an unfair deck – I feel selfish that I think I have been dealt that unfair deck, when in fact, my children got the raw end of the deal. I feel like I’m slowly drifting back to the days of that horrible anger I had 6 years ago. I feel alone. There are very few people in this world who can understand the feelings I’m having (that’s a good thing) but yet, way too many people do indeed know what these feelings are, more than I wished ever knew. Unfortunately, there are people out there who have been through worse than I.
Six years ago on the 27th of February, Thomas, my 6 1/2 year old, went through open heart surgery, for a condition called Tetrology of Fallot (TOF). I spent 8 months before that cursing the Lord and blaming God for doing this to my child. I was yelling and cussing at the Lord for punishing my child for my mistakes. Then the day Thomas’s surgery came I asked for forgiveness and asked Him to protect and watch over Thomas for me – and he did. Thomas came through the surgery with flying colors, however there were some bumpy roads along the way. He had drug withdrawls from all the medications he was on and incompetant people scaring me so much that I almost passed out but Thomas made it through it all and so did I.
Two years later, we had to watch Thomas get cut from the other side and he had back surgery to repair his congenital scoliosis, which without it, my spunky 6 year old would most likely be paralyzed and in a wheelchair today, instead he is playing baseball with his daddy as his coach – amazing. Thomas has a slit on his chest and on his back and is the most caring, perfect little boy a mother could ever ask for and of course he is an amazing big brother.
To this day, I know that Thomas is the reason I was brought to the Lord. Thomas is the reason that I changed my ways and walked away from certain people and certain situations and lots of stupidity. Thomas saved me, in turn brought me to the Lord. Eeveryday I hold onto it and lately it’s the only thing that’s been getting me through this last year.
One year ago, we found out that our third son was also going to be a Congenital Heart Defect (CHD) baby. What with going through everything with Thomas, and then having Samuel, who was perfect, healthy and a brat at times but the love of our life. We never imagined that we would have another baby who would have to go through open heart surgery. To make matters worse it was a more life threatening CHD than Thomas’. Who would have ever thought there was something more serious than what Thomas had to endure.
When I was 6 1/2 months pregnant I had to go on bedrest due to Jonathan being way under the size he should have been and a cardiac baby. Not only was I taken from the place that let me forget about everything to come, my work, but I had to sit around and feel completely helpless and have so much time to think and ponder about what was to come and what could happen. It was agonizing!
Then the day came when Jonathan was born, and I literally got to see him for 30 seconds before he was taken away to the NICU. A team of doctors and nurses flooded my room an hour later and gave me the details. Jonathan was born with Transposition of the Great Arteries, Double Outlet Right Ventrical (DORV), and Pulmonary Atresia and that he was going into surgery in one hour for a minor procedure called balloon sepostomy on his heart that would help him live for a couple weeks ’till surgery. The following day he would have the esophogus surgery, this was because his esophogus and stomach were not attached (what more?). A couple weeks later we found out that he had to be flown to Los Angeles, because his condition was so severe, the surgeon didn’t feel he should stay in Las Vegas…
THANKS SO VERY MUCH FOR THE NEWS…Needless to say, Jonathan did amazing (that’s an understatement – there are no words to describe how strong this little boy was). My family and friends came together and prayed and took care of Thomas and Samuel for us, so we could be there for Jonathan. We owe so much to everyone for getting us through those two months. Since it’s been wonderful and amazing and I wouldn’t change it for the world
I always knew Jonathan would have to have surgery again someday but we were hoping it wouldn’t be for another 3-5 years. However, last week he had a procedure (I keep calling it a procedure, because it doesn’t sound as bad as surgery, but yeah, it was pretty much surgery). The procedure came back with half good news and half bad news. I knew in my heart that Jonathan was going to have another open heart surgery for the last 2 weeks, but I’ve been holding onto a miracle and I guess that miracle didn’t come soon enough. On March 17 Jonathan will undergo his second open heart surgery. I thought the news wouldn’t hurt as much, as I’ve been expecting it, but I guess I’ve been in denial at the same time. It sucks! There’s nothing I can say as a pep talk to myself and I know in my heart that Jonathan will do fine and be home soon afterwards but it still sucks. It’s not fair that my baby has to go through this yet again, so soon and he will be 9 months old tomorrow and has only been home for 7 months and yet again is going to be taken away for a week. Yeah, I know, a week isn’t that long, compared to the lifetime to come and that I’m holding onto and it still sucks!
This “unfair deck” can be taken away at any time and I am seriously begging for it to. I want to be able to go on with my children and their lives and be left alone; but I know that will never happen and I know that the rest of my life I will worry. Why? Because it’s something, as a parent of a CHD baby, we have to be ready for. We will never have that normal life that so many of our friends and family have had or will have.
I am a CHD mommy:
Someday, down the road, I can only hope for a decade of no surgeries or less worries and great reports, but for now, I hold onto that day when I get a smile or a ug from all of my boys – my CHD boys and my little gorgeous brat of a boy, Samuel (which they all can be, but I LOVE IT). My children are my life, and no one can say anything else to me to make me feel bad because I don’t want to go somewhere and I want to stay home with my babies, even if I have been with them all day. I will not let a certain someone (who supposedly cares for my family) bring me down and ask me, what if they die…fyi, that’s the stupidest thing to say to a CHD parent or any parent for that matter, use some common sense because everyday, I have to understand the risks of all the surgeries, procedures, and life in general. I know the risks only far too well.
I know more than anything that I do have the Lord, my God, holding onto me, holding onto my children, and holding onto those doctors delicate hands as they operate on my baby.
And thank you to everyone who’s always been there for me, for us, with a simple, yet perfect prayer, for that kind gesture, a hug or a smile, or just that friendly word that you are thinking of us.
Thank you to everyone who’s been there for us through everything especially my family who have taken my children and not let them experience the hurt their parents suffer and give them a day of fun in the sun…just…THANK YOU AND GOD BLESS
Written by Naomi Anderson