Trusten was born with hypoplastic left heart syndrome (HLHS). Was his condition diagnosed during a prenatal ultrasound?
We had some miscarriages before that were genetic issues. When we found out we were pregnant this time, our doctor thought we should go in for genetic testing to make sure all was good for Trusten. So we brought the whole family since it was going to be a 3-D ultrasound. When the technician got the doctor, he looked at the ultrasound and asked if we have a history of heart problems. I told him that we did. It didn’t hit me at first that he saw something wrong, but my husband asked if he saw something wrong. The doctor saw that he had HLHS and started showing on the ultrasound what he saw and what that meant. He told us in layman’s’ terms that he had half a heart.
As a mother, how does that news touch you?
It was devastating. As a mom, you’re hopeful and believing all will be fine for your baby. Then to learn that he may not survive an hour after delivery, that’s devastating. I had to accept my diagnosis and cling to my faith in God and know that there was a purpose for this.
You named him Trusten. Tell us about the name and its significance to you.
We named him after Proverbs 3:5, which says “Trust in the Lord with all your heart and lean not on your own understanding.” I didn’t have the strength to deal with such devastating news. I had to break down and call out to God. We named him after that verse. The verse fit perfectly with what God was telling us to do.
How does a trial of that magnitude challenge (or stimulate) your faith?
I basically stayed as close God as I could to get through. I stayed in my Bible and listened to uplifting songs and did a lot of soul searching. I asked God why we had to go through it, and why Trusten had to suffer? He’s an innocent baby that shouldn’t have to go through that, but I had to go back to the Bible and know that God’s ways are not my ways and I just had to trust. I had to give up control. I think he wanted me to share with the world how I was getting through; the closeness that we had—my hurts, my pains and my struggles and that you can go through something so painful and still find joy and happiness. Trusten was able to get a heart transplant. What was that like for you?
He had two open heart surgeries originally. After the second one, they were worried he wouldn’t survive a third. He got an infection. His heart failed before the third. The docs said breathing was too much for his heart. On January 31, 2014, my husband and I stepped out of the hospital and we left him with my husband’s mom and we got a call that his new heart was ready. It was a roller coaster of emotions because someone had to suffer a tragedy so that he could live. That’s hard to accept and process. It was bittersweet.
How old is Trusten now and how has he adjusted?
Two. The first year he was in the hospital the whole time. He as sedated and tied down a lot so he wouldn’t pull out his tubes. So he was limited on all he learned his first year. Survival came first. When he got his new heart, he took off. He is happy and full of energy. He does therapy six times per week (physical therapy, speech therapy, occupational therapy, developmental therapy) and he’s trying to get stronger. You would never know anything is wrong with him until you raised up his shirt.
What are his hobbies? Is he an active child?
He absolutely loves to run around and act like he’s just as big as his brothers and sisters. He loves playing with trucks and cars. He asked Santa for a truck and got a Power Wheels truck that his brother drives him around in. He likes playing at his grandparents house and loves cartoons. His favorite is Paw Patrol. How has having Trusten added value to your life?
I feel like him having to endure such hardship at such a young age was inspiring to me. It’s a hard reminder of what Jesus Christ endured for us. I feel like we’ve all learned that from his experience.
How do you share that value with other families with children wrestling with similar heart-related diseases?
We’re starting an outreach center in our community in honor of the donor family, since it was such a selfless gift that they gave a heart to us. It’s called Restored Community Outreach (restoredcommunityoutreach.com). We want to help others find abundant life in God and to help them in their faith when they go through trials. We feel like Trusten’s heart was restored physically and I feel like my heart was restored spiritually. So our tagline is restore hope, restore healing and restore life.
