Facing the Inevitable



"Your baby's only hope for survival is a heart transplant."

No parent is ever prepared to hear those words. And you never forget them, nor who said them, nor the day they were spoken.

I heard them during an ultrasound in my fifth month of pregnancy with our first child. They turned my whole world upside down. Due to cervical surgery a year earlier, I needed a special sonogram to make sure my body could hold the pregnancy. Not knowing what was about to happen, I was all smiles as I watched the screen image wiggle and move. That was our baby! MY body was making a tiny human being. My husband Todd and I had made someone. Just…wow!

But as I caught a glimpse of the sonographer’s face, my elation faded. I could see worry in her eyes. And when I asked if anything were wrong, she attempted a smile and said she needed to get the doctor. I don’t remember much after that … just that I was being referred to All Children’s Hospital in St. Petersburg, Florida, and that our baby had something called Hypoplastic Left Heart Syndrome (HLHS). Basically, our baby had half a heart. The walls seemed to come in on me. I felt lightheaded; I wanted to scream.

Todd couldn’t make the appointment that day, so I asked the sonographer to write down the baby’s sex, fold the paper, then tape it shut so I couldn’t see it. I wanted to share with my sweet husband the moment God revealed to us whether we would have a son or a daughter. With that note, I left … in tears. How I got home is still a mystery to me. And when Todd arrived home, I fell into his arms and we cried together. Once we found the strength, we opened our note — we were having a boy.

The next months brought weekly hospital appointments for echos, lab work, EKGs, medicine to keep his heart strong, and more prayers than I could count. We hold dear a special printout from that ultrasound — in it, right next to our baby’s face, is the face of another. We were not having twins. We were sure it was his angel.

We had actually gotten used to the fact our baby was sick, but that he was safe as long as he was in the womb. I didn’t want to give birth until he was 30 years old, but God had other plans. Our sweet boy made his way into this world, pink and strong … and so beautiful. We expected a frail, blue baby who would be whisked away immediately. But instead, I got to hold our little miracle in my arms for a full 20 minutes. Todd kissed me then followed behind the transport team to the cardiovascular intensive care unit. He was still pink and gorgeous when they arrived in his new room, and even the staff asked if he were truly an HLHS baby. That was our first clue that he was going to show the world just how strong he really was.

"Superboy" survivor TJ Resch

We were being prepped for our son, whom we named TJ, to have a series of reconstructive surgeries to repair his heart. The paperwork was signed, he was baptized, and our prayers were being sent up. But then the surgeon came into the room and, with tears in his eyes, informed us that TJ’s only hope was a heart transplant. We froze. What?! No. This was not the plan. The scheduled Norwood procedure was canceled, and TJ was immediately listed for a transplant. We felt completely helpless. Lost. We knew nothing about any of this and had much to learn.

Well, that’s where the biggest lessons began. That very day we felt the incredible peace of God’s arms around us. We knew that, no matter what, He was with TJ. And with us. And the nurses and doctors — the entire staff at the hospital. God was right there. And I trusted Him. I had to.

Around 5 a.m. a week later, I was startled awake by my cell phone at the Ronald McDonald House. It was the call. The team had accepted a heart for TJ. This had been the most difficult prayer I have ever made. Praying for a “new” heart for TJ meant another child was going to die. Nothing seemed fair. To this day I pray for the donor family.

Fast forward to just after the transplant — TJ was doing great. We began to breathe again. The days flew by as there was so much information to digest. So many meds. And precautions. And germs — there were so many germs to know about! But before long, we were able to take our bundle of joy home. He was finally in the real world! The birds were singing and the wind blew through his hair. It was Halloween — my new favorite holiday.

Robin and Todd Resch with sons Donnie (l) and TJ (r)

TJ was hospitalized three times his first year, but his team is amazing, and he was always okay. Nine years passed with only a few speedbumps. Then, this past September, he contracted hand, foot, mouth disease. He got through that fairly well, but then it came time for his annual heart biopsy. We were all set to go home afterward, but they wouldn’t remove his IV. Something was wrong. And sure enough, his cardiologist came in with a long face: TJ was in rejection — his immune system had finally found and attacked his heart. (The human body will never see a transplanted organ as its own, so it will attack the “new” organ when it is found.) His immune system may have gone into overdrive fighting the virus. This was all new territory for us. But again, we felt God’s love and knew our son was in His hands. After a hospital stay, medicine change and another biopsy, TJ came home.

Our doctors told us that it is inevitable that he will experience a rejection again and that he will need another transplant one day as his body will eventually succeed in attacking his heart. But one of our greatest lessons is to trust God. From that trust comes a certain indescribable peace.

The past 10 years have brought us immeasurable joy. And worry. But mostly joy. I have our incredible son to thank for teaching me about true strength and courage. He is one amazing young man with a big, beautiful heart. We are blessed beyond words.

Knowing that tomorrow is never promised and feeling grateful for every yesterday, I thank God for the gift that is each day.

This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Heart Association.

 

Our Heartfelt department highlights our readers’ experiences with heart disease from their own perspective. We’re always looking for contributions, so please send us yours. Before submitting, please review our Writer’s Guidelines.


For more personal stories and information about children and heart disease, see our Kids section.

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