Heart Story
Listen to this encouragin story from Asher’s mom, Kurstin:
“Asher was diagnosed with Hypoplastic Left Heart Syndrome, HLHS, during my pregnancy with him at my 20-week anatomy scan at the Upstate as Prisma Health Peds Cardiology. We were sent to MUSC for a second opinion and confirmation that what we were being told in the upstate was exactly what he had. We met with the team at MUSC and they confirmed Asher did in fact have, HLHS. Scared was not the word when I heard those words come out of the doctor’s mouth – I was terrified. I had many different emotions running through me. MUSC was very supportive and answered every question I had. Asher was not like many heart babies, he was big! This was a blessing since it would help him to be bigger for his first surgery. December 5th, 2022 gets here and Asher is born at 12:44 PM. He was so normal. He cried, looked healthy, and did all the things a baby was supposed to do. They quickly took my baby, put him on oxygen, and put what felt like a million lines and tubes directly on him. I couldn’t hold him, change his diaper, or feed him. I felt like I had a baby with no baby. The doctors and nurses were exceptional and took the best care of me and my baby during this time.
Fast forward to December 12th, 2022. Asher went in for his Norwood Procedure, or stage 1 of 3 surgeries he would undergo. I was an emotional wreck and did not know what to do or say. I paced back and forth patiently waiting for the beeper to go off that was provided by the medical team for updates. We received an update once every hour. Asher had Dr. Rajab was his surgeon. Asher and Dr. Rajab both did absolutely exceptional. Dr. Rajab completed the surgery in less time than anticipated and was very pleased with how it went. As his mother, this was some of the best news I had ever been told.
Walking into the PCICU to see my baby for the first time post-op was a nightmare, but also such a blessing. He had medicine I had never heard of, IVs, chest tubes, lines, and more tubes and I had no idea what any of those were or the purpose of them. My baby was cold and gray, and his chest was wide open, but he was alive. He was here with me. Every single day Asher showed improvement: his chest was closed just two days after the operation, the breathing tube came out after 4 days, and the wires, tubes, and medicines dwindled down one by one.
Two weeks later, we graduated from the ICU and made it to step-down, which meant we were on our way home. Asher continued to do well, and we took it day by day until we got to go home. January 9th, 2023 was the big day, we broke free from MUSC and my baby was homeward bound to meet his brother, John Michael, sister Raelynn, and fur brother Rucker. We got home that evening and settled in very nicely. We check stats and weight every day to ensure that he is gaining and growing properly to complete his next surgery, the Glenn Procedure. We are patiently waiting for our turn, and we have that scheduled for August of 2023. Hopefully, everything goes as planned, we will come home from this procedure in 7-10 days and won’t have to go back for a couple of years to have his Fontan Procedure done.
Emerson Rose® was such a great help to us. During one of the most difficult times of my life, I needed help, financially and spiritually. I was behind on my bills and felt as if I was never going to get caught up or my utilities would be disconnected for nonpayment. The ERHF® stepped in and made sure that did not happen. They helped me keep my power on. Prayer is the best medicine of all and they did this with me as well. We prayed together and they also assured me they would continue to keep me and Asher in their prayers.
My encouragement to other heart families is to keep your faith and trust in God. God is THE ONLY reason Asher is here with me today. He was working the surgeon’s hands and the rest of the medical team’s hands that day and has continued to the whole time. Pray and ask for support. Prayer is the best medicine and God is the ultimate healer. You got this ’cause He’s got you!”
