In early November 2021, we went to our kids’ annual checkup appointments, and Eli had very elevated blood pressure. The nurses would not record it on his growth sheet. Instead, they sent in several nurses with several different blood pressure cuffs to check him. Praise God his pediatrician didn’t ignore this and let it go. We were able to see a wonderful pediatric cardiologist who worked with our pediatrician.
I walked my six-year-old into the doctor’s office expecting something small, causing a blood pressure issue. He explained to me that he believed Eli had Coarctation of his aorta. He explained to us he barely felt the pulse in his feet and the blood pressure in his leg was much lower than in his arm. (which should be completely opposite) He told us he didn’t want to get too far ahead of himself until the Echo.
During the echo, the radiologist got up and stated that she would bring the doctor in. Right then, I knew. I knew something was wrong with my child’s heart. He explained Coarctation to us as a narrowing of his aorta. He assured us after surgery, we would regulate his blood pressure, and he could live a normal life.
The nurse walked us out into the waiting room. I asked my husband Jonathan to take Eli to the bathroom. I walked to my against it and began sobbing with a pain I had pain I have never felt before. I called my parents and spelled it for them so they could research it. I heard my mama crying on the other end of the phone. Jonathan brought Eli out, he put him in the car. He hugged me tighter than I think he ever has.
Once Eli had a CT Scan to diagnose him officially, the UVA team decided that the cath lab surgery with the balloon and stent was too risky for complications later in life for Eli. A thoracotomy in which they go in under his arm into his back would be best. They would remove the section of the narrowed aorta and suture it back together. Once again, I felt a knot in my throat.
We called on everyone we knew to pray for our son. The love, prayers, and donations from our friends, family, community, school, workplaces, local emergency departments, churches, and so many more overwhelmed my husband and my hearts!
The next day we headed to the hospital. Eli cried as we went into the door. The anesthesiologist gave him her phone to watch YouTube on the way back to the OR. The surgeon played with him. I’m telling you, these people were who we prayed for! The waiting seemed like a fog. The days in the hospital passed, and each day he got stronger and we got to come home.
At Eli’s follow-up with his cardiologist and was given a second CHD diagnosis of a bicuspid valve. Eli takes blood pressure medicine twice a day and must attend regular appointments to measure his aorta and check his valve. He cannot play contact sports. Our son’s journey with CHD may be simpler from here on out, and we could also walk into the cardiologist any day and walk out with plans for another surgery.
We were told Eli was 1 in 100 children diagnosed with CHD. Coarctation makes up only about 4-6% of CHD cases. One pediatrician thought he would never actually see, especially being diagnosed at six years old instead of birth! I know a miracle today.