“She calls her scar a “beauty mark,” and is proud to show it off to everyone she meets.”
At about 16 weeks pregnant, I found out that I was going to have twin girls! I was so excited, and couldn’t wait to pick out baby names and start filling their closets with the cutest dresses and bows. A few weeks later, my husband and I headed to an appointment, thinking we would just be getting a glimpse of those sweet faces and be sent on our way. The ultrasound technician was taking longer than usual to do my ultrasound, and I knew when she said that she was going to bring the doctor in to get a better look that something was not right. He came in and delivered the news that Baby A (Aubrianna) had a heart condition which he believed could be Hypoplastic Left Heart Syndrome (HLHS). In a normal heart, the left side pumps oxygenated blood throughout the body. However, children born with HLHS are born with an underdeveloped left side of their heart.
At one of my follow up appointments, Aubrianna’s heart rate was as low as 70 bpm. My doctor told me that he didn’t know if she would make it to term, and we should prepare for the possibility of a still birth. At the following appointment, we were shocked to find out that Aubrianna’s heart rate had more than doubled. Toward the end of my pregnancy we scheduled appointments with several doctors and surgeons at Egleston and were able to see a few babies with HLHS. Even so, I don’t think I was truly prepared for everything we had to face.
On October 16, 2013, I delivered two sweet baby girls, Aubrianna and Annaleigh at Northside Hospital in Atlanta. Four days later Aubrianna was transferred to CHOA at Egleston where the doctors began doing more tests and preparing their plan for her first operation. The doctors met with us and explained that she had several other defects on top of having HLHS. However, they explained that these defects were actually helping her, and she wouldn’t have to have the Norwood procedure (a three step procedure to create normal blood flow). They put in a shunt at 6 days old, and two weeks after the operation we were able to come home.
She had weekly appointments with her pediatrician to check her O2 saturations and weekly checkups with her cardiologist. On April 18, 2014, Aubrianna went back in for the Glenn Operation, and was able to go home only 3 days later! On February 18, 2016, Aubrianna had the Fontan Operation and was able to go home after one week. She had a little bit of trouble adjusting to this surgery, so she had to be on oxygen at home for about a month. She’s been in the hospital a few times since then for things like the flu and a stomach virus, but it’s going to take a lot more than that to slow her down!
Today, she’s a spunky four year old that continues to amaze me every day. Everyone that meets her is shocked when they find out that she only has half of a heart! She enjoys singing and doing things that some doctors said she might not be able to ever do, such as jumping on the trampoline and taking tumbling lessons. She also loves playing with her twin sister, Annaleigh, and her younger brother, Trace. She calls her scar a “beauty mark” and is proud to show it off to everyone she meets. (However, now that she’s older, I’ve tried explaining that she can’t lift her shirt and show everyone her mark anymore). I’m not sure what Aubrianna will have to face in the future, but I do know she will have a beautiful testimony to share one day. Aubrianna is a walking talking miracle, and I’m so thankful that God has continued to hold our hands every step of the way!