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Tell Me a Good Story: HLHS

Sibley gives us peace of mind and full confidence in Luke’s care.

Early in my third trimester, I went almost 24 hours without fetal movement. A trip to the hospital revealed Luke was fine, but an ultrasound was requested as a precaution. At the time, I was under military healthcare, so it wasn’t until the next week that I got an ultrasound. After the ultrasound, I had to wait again for the results. But during the scan, several people came in just to look at his heart, so I knew something was wrong.

My husband was deployed overseas, so I took the phone call alone – Luke did not have a four chamber heart. At first, we were devastated and so scared for Luke’s future. We believed that his condition was certain death. Two weeks later, when I was finally able to see the army perinatologist, we learned that Luke had hypoplastic left heart syndrome. After that, we started to have hope. We were even more encouraged after choosing CHOA for his surgeries. While it was still a worrisome and emotional time, nothing gave us more peace than finally arriving in Atlanta.

Luke had the typical three open-heart surgeries for HLHS; his Norwood was at four days old, his Glenn at 3.5 months old. Luke’s last surgery, the Fontan, was performed at Egleston by Dr. Kirk Kanter.

Sibley gives us peace of mind and full confidence in Luke’s care. Our family lives in Georgia today because of Sibley Heart Center. Several years ago, the Air Force assigned us to a base in Virginia. We were happy with Luke’s cardiology care until he was sent to an adult hospital for an MRI. The experience was quite traumatic for Luke. The MRI revealed Luke needed a cardiac catheterization to have a stent placed. Our insurance would not let Luke come to Georgia so we relocated. I cannot even begin to explain the calm that filled me when we made that decision. The only time Sibley will break my heart is when Luke is too old to be treated by them!

Over the years, from the doctors and nurses, to the respiratory therapists and custodial staff, we’ve encountered so many kind, helpful and encouraging people. After Luke’s Fontan, he would scream when touched or examined by strangers. One patient care technician was trying to take his blood pressure, but he would not stop crying. In the sweetest voice, she said, “I just want to hug your arm. Won’t you let me hug your arm?” He was only 21 months old, but he stopped crying and held out his arm. We still call them arm hugs.

We love Dr. Harden. He always remembers to ask Luke about his trips. Dr. Mahle was amazing to us in the beginning. I wish I remembered all of the names of people who took care of him. A few names I remember are Betsy Christiansen (she really taught us to take care of Luke and told us not to let his heart condition control how we treated him so he would be a good kid), Kathryn King (she had Luke after all three surgeries and even called in on her day off to check on him), and ZaDonna (our best night nurse ever who we’ve seen a couple times since his surgeries in other departments.)

Today, Luke is 14 and doing great. He has six month checkups with Dr. Harden and annual cardiac Echos. Down the line, surgery is a possibility due to a dilated aorta and leaky aortic valve.

Luke is in in the 9th grade and in his fifth year being homeschooled. He was diagnosed with Asperger’s Syndrome/high-functioning autism at four years old. For our family, that has often caused more struggle over the last 10 years than his heart condition. Luke’s first love is geography. He loves to travel. We have been taking trips for his birthday since he turned 10 years old. Our current goal is to take him to the first 48 states by his 18th birthday. Last year, we drove from home to Los Angeles, California the long way. We went through 14 states (10 new ones for Luke), visited six state capitol buildings and the Grand Canyon. We already have our trips planned through 2021, when he turns 18.

Before Luke was born and during his first few years, there was very little positive information online for HLHS survival. We really found mostly memorial web sites. There was no Facebook or Instagram for families to share stories. If the hospital didn’t introduce families, you met because somebody who knew somebody who knew somebody knew you. I once met a newly diagnosed HLHS family from another state because they went to a dentist where the receptionist was the sister of someone my husband and I knew from college. I spent Luke’s first several years reaching out to families via email, phone calls and care packages. There was no better feeling to hear from a very scared mom and dad the simple phrase: “Thank you for giving us hope.”  

So to other Heart Parents, take it one day – sometimes one hour – at a time. There will be good and not so good days. You might feel hopeful one minute and petrified the next. This can apply to before your child is born, when they’re in the hospital and even after you go home for the first time. Reach out to family and friends who encourage you, support you, and love you. If you’re having a bad day, try not to read sad stories online. If you’re having a good day, reach out and encourage another family who might need you.

Luke also loves history and government. One of his most memorable days was meeting Governor Deal in December 2015 on a church trip. He reads nonfiction for fun, watches documentaries, and never misses the nightly news. Luke’s number one hobby is aviation. He loves to “fly” all over the world on his laptop simulator. He is a unique kid that prefers talking with adults than kids his age. If money was not a factor, we would buy an RV and hit the road until his next checkup with Dr. Harden! #1in100 #CHDAware #chdcommunity

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