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Jonathan Anthony

TGA/DORV/PA; Arterial Switch/Artificial Conduit Replacement/2x Heart Caths


Jonathan Anthony being his silly, loud self, and hogging all the toys!
Almost 3 years ago, we found out that our third son was also going to be a Congenital Heart Defect (CHD) baby. After going through everything with Thomas (born with Tetralogy of Fallot in 2002), and then having Samuel, who was perfect and healthy, we never imagined we would have another baby who would also have to go through open heart surgery.

And to top it off, it was more life-threatening than Thomas' defect. 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 bed rest 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—he was going into surgery in one hour for a minor procedure (not really minor) on his heart that would help him live for a couple weeks 'till surgery, and the next day he would have esophagus surgery, as his esophagus and stomach were not attached (what more?). And a couple weeks later we found out that he had to be flown to Los Angeles from Las Vegas (where we were living) 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 amazingly well (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. EVERYONE, WE OWE SO MUCH TO FOR GETTING US THROUGH THOSE 2 MONTHS! And since then, 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, we were hoping for 3-5 years. In February of 2009 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, a heart cath, 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, but I was holding onto a miracle. I guess that miracle didn't come soon enough, because on April 27th, 2009, Jonathan went through his second open heart surgery. I thought the news wouldn't hurt as much, as I've been expecting it, but I guess I was in denial at the same time. IT SUCKED! There was nothing I could say as a pep talk to myself. I knew in my heart that Jonathan would do fine and be home soon afterwards, but IT SUCKS! It's not fair that my baby had to go through this yet again, so soon. He was 11 months old and was yet again going to be taken away for a week. Yeah, I know, a week isn't that long, compared to the lifetime to come; that's what I'm holding onto, but IT SUCKED! The only thing that matters, is he did spectacularly well.

He's doing awesome now and started walking at 14 months old. He had a little "boy" surgery, for an undescended testicle at 15 months and today is almost 21 months old, and full of life, mischief, and just HEALTHY!!!

— Naomi, Jonathan's mother (Sioux City, Iowa)


This article was last updated on February 10, 2010

  • Born: May 21, 2008
  • Diagnosis: Transposition of the Great Arteries, Double Outlet Right Ventricle, Pulmonary Atresia; EA TEF (esophagus not attached to stomach)
  • Treatment: Balloon septostomy at 4 hours old; esophagus surgery at 1 day; arterial switch at 2 weeks (Open Heart Surgery); heart cath at 8 months; artificial conduit replacement at 11 months old (Open Heart Surgery); "Boy" surgery at 15 months


 

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Disclaimer: Our members' stories represent their own perception of their experiences, and the medical information contained within has not been reviewed for accuracy prior to publication. Stories are presented for informational purposes only, and should not be substituted for professional advice. Always consult your (child's) physicians with your questions and concerns.
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