The Story of Joseph Logan DeLoach by Susie DeLoach

April 23, 1996 is a day I will never forget. That day we found out the precious unborn child I had been carrying for 19 weeks had Hypoplastic Left Heart Syndrome. On that day our dear friend, Dr. Cordes, came into our lives. He told us of our options. Doing nothing was not an option for us. We felt this child deserved every chance at life we could give him. A transplant didn’t look promising because of the wait and the improbability of getting an infant heart in time. We chose the Norwood procedure. We had to wait a whole month before they could even tell if Joey’s heart was even operable. Finally, a month later, we met our friend Dr. Darragh who told us that yes, it looked like Joey was a candidate for surgery! At least Joey had a chance!

For the months that followed we could do nothing but pray. Unlike a lot of parents, we were lucky enough to have the time to get over the shock of it all. Going through the shock was horrible. We would be sitting there, fine one minute, then suddenly one of us would break down. I couldn’t even watch television because I just couldn’t think about anything else. Funny thing, sometimes when I was crying Joe would kick me as if he was telling me everything would be okay. I feel so horrible for all the families that don’t find out before the baby is born. I just can’t imagine going through all the shock only hours after the baby’s birth. I will be forever grateful to our ultrasound tech, Roseanne.

Because I had Toxemia (was on bed rest for two months, this only added to our worries) I was induced at at 38 weeks at Indiana University Medical Center. After 51 long hours of labor, our sweet boy was born on September 7, 1996. I’ll never forget the pain of not being able to hold him. They took him immediately down to the special care nursery. They brought him back to me in a transport bed so I could see and touch him. Later that night after I had rested, my husband Rick took me to Riley to see our boy. I finally got to hold him.

On his third day of life, Joey underwent his first open-heart surgery at Riley Hospital for Children (Indianapolis, IN.) He did great at first. The doctors said they hadn’t seen a Norwood baby do better. He got an infection about two weeks after surgery. They started treating him with antibiotics when they noticed some seepage from the chest wound. On a Saturday morning we got a call that they were putting Joe back on the ventilator. By the time we got there he was lifeless and ghost white. His blood had quickly turned acidotic. He was about to code. The doctors quickly opened him up right there in his room. Thank God they did, because while they were in his chest cleaning the infected area, his heart stopped. They massaged his heart for 15 minutes and got it going on its own again. We were told that Joey was only one in three babies they had been able to revive in this situation. That was the moment I became convinced that guardian angels existed. All of the recovery time up to this point was lost and we had to start over from scratch. Our boy is fighter though and climbed his way back to where he was before. He was in the hospital for 6 ½ weeks. He had a bad reflux problem and they had to make sure he was eating okay before they would let him go home. On October 22, Joey finally went home with us. I’ll never forget the sun shining on him for the first time. His hair, which looked strawberry blonde in the hospital was suddenly this bright copper red! Getting home and being solely responsible for this special child was so intimidating. I remember making each other double-check the Digoxin (heart medicine) dosage. We were so stressed out we were bickering the moment we walked in the door. Things did settle down and we found a routine. It’s hard just being a new parent, but this, whoa! The holidays were full of bliss. I felt a renewed faith and appreciation for what life was all about.

The following June, after months of anxiety and worry, it was time again to visit our friend Dr. Brown for the second surgery, the Bidirectional Glenn. The weekend before everyone came to see Joe. No one says it, but everyone knows this is “just in case” it’s the last time. The surgery took a very long 9 hours. This time was nothing like the first. We were home in seven days! The only problem was a little fluid on the lungs, which is normal and fixed with treatments by the wonderful Riley respiratory therapy staff.

The Glenn was over a year ago. Joey’s Fontan surgery won’t be for another year. Life has been wonderful. I never ask why this happened. I’m just thankful that we have been blessed with this special-hearted little boy and that I have a strong, devoted husband to lean on. I’ve learned the true meaning of life. I’ve met so many wonderful friends I never would’ve met. My new and very dear friend, Amy, and I are devoted to helping other families through our Indiana support group Our Hearts. I’ve decided to see a therapist to help me learn how to cope with everything we’ve been through. I’m tough while it’s happening, but now that things have settled down things are kind of creeping up on me. I can’t even think about the next surgery, but I know it’s around the corner. Having a child with a congenital heart defect is so very hard, but I wouldn’t trade a moment of it. It’s what makes Joey who he is. In my husband’s words, our little “bad ass!”

Update on little Joe. Joe’s Fontan surgery was May 10, 1999 and he is doing great! Although there were no complications, it was the hardest surgery for us all to go through. At the time of the surgery he was 2 yrs, 8 mos old. A toddler is old enough to know kind of what’s going on, but too little to understand any of it. He didn’t understand why Mom and Dad couldn’t pick him up (chest tubes, etc.) He didn’t understand why he couldn’t have anything to drink at first. (fluid control.) He didn’t understand why all these strangers were poking at him, looking at him, and hurting him. He didn’t understand why his hands were tied down and why he felt so dizzy and why he couldn’t get up to play with his cars. Rick and I were exhausted because one of us was there all the time. Occasionally we would have a “sitter” and actually have a meal together. Things were very tense between us, but I know that’s very normal. Amy Dini stayed with me for the first 3 days and was an incredible help. We both spent the night in Joey’s room on uncomfortable chairs and would take turns comforting him when he woke up. There are no words to express how much Amy’s help and caring meant to me. Rick would go home for most of the night and Amy and I would go home and nap for a few hours and shower when he got back early in the morning. The day after surgery was very hard because Joe was startling awake about every 20 minutes because of a bad reaction to the Morphine he was on. Amy and my mom were there to help keep him calm. Things were much better when he was taken off of it. Thankfully he came out of the o.r. off the vent so we didn’t have that to deal with. His dad had a very hard time dealing with watching his buddy go through everything. It was hard for me too, but I think as his mom I’m “made” to put my feelings aside until Joe is okay. People deal with things in different ways, and no way is right or wrong. A few days before surgery, I asked Joey how many days he would be in the hospital. Having just learned to count to 10, he casually replied “six.” Guess what, he was out in six days!!! We’re thinking he got some inside info from somewhere! For three days after we got home, Joey wanted nothing to do with me. When I tearfully told this to my therapist she said something wonderful. She said that Joey is understandably angry about what he has been through, and he trusts me enough to know he can aim his anger at me and I will still always be there for him. A week after he go home, out of the blue he said, “Joey’s heart fixed, Joey all done?” We answered yes. He said, “Mommy, Daddy and Joey all done?” We answered yes, we’re all done. He said, “Daddy’s heart fixed?” I answered, “Yes, daddy’s heart is fixed because Joey ’s heart is fixed.” I can’t end this without thanking Dr. Brown, Dr. Uni and Dr. Cordes, and especially all the Peds ICU nurses. Thanks to the anesthesia team and to everyone who helped take care of Joe. Thanks to Theresa Flaspohler who is always there for us! Most of all, thanks to all you heart mommies whose caring and support meant the world to me: Amy, Lisha, Stephanie, Jill, Rhonda, Ann, Buffie, Pam, Tammy, Leslie, Kris, Debbie, Donna, and I know I’m forgetting people, so thanks to all of you! I don’t know how I survived the first two surgeries without all of you! Finally, thanks to all of our family, your love keeps us going.

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