Lana, born 1995Lana was born almost 17 years ago with HLHS. Thirteen hours after she was born, she was diagnosed and needed to be flown to Tampa, Atlanta or Charleston, SC for surgery. We chose MUSC in Charleston and she was flown immediately there.
The doctors at the time did not think she would survive the flight but that was the first of many odds she overcame. When she was five days old she had the Norwood procedure. The first 24 hours was difficult but once she cleared a couple of hurdles, she was well on her way to recovery. She had the Glenn at 6 months and years later the Fontan.
Lana continued to thrive and do well until she reached 2nd grade year in school. She started having these odd episodes where she would have a hard time catching her breath and her heart would race. I remember her telling me she felt like her heart was going to beat right out of her chest. Once the episodes were over she would be completely wiped out. We went to the ER, to the cardiologist and they’d change her meds, or took her off meds but no-one could figure out what was going on and I began to think they thought I was over reacting.
We finally got a PC that listened to me. He said that I was with her more than anyone and I would know and to trust my instincts. I have kept that advice and used it to fight for all of my children when necessary. Sure enough, after doing a stress test, followed by a cath they found her right ventricle was decreasing in function and put a pacemaker in. She recovered very well from that and didn't have any other issues for a very long time.
We moved to Arkansas a few years later due to my husband’s job and upon getting her set up with the Children's Hospital and new cardiologists in the area they discovered some things that they weren't super pleased with. The function in the right ventricle despite the pacemaker continued to decrease. With some more testing they told us that she ultimately needed a heart transplant. I remember the day well. We spent two days in Little Rock having caths and testing done to prep her for being placed on the transplant list.
We took a trip home to Florida as she would not be able to travel for a while. She was listed in March of 2010. She continued to go to school and live life normally while we were waiting on "the call" until a follow up visit right before Thanksgiving that year. After doing a regular echo the doctors told us that she was very sick and even though she didn't look very sick on the outside her heart was very, very sick and would not last much longer. At Christmas break she came to me and told me that she didn't think she could go back to school, she was just too tired. We got through Christmas and new years and on January 4th, 2012 she was admitted into Arkansas Children's Hospital in Little Rock and placed in the cardiac ICU step down unit with a port of Milrinone to try and preserve her heart function until a donor could be found. Her teachers sent all her work and she went to the hospital school and had physical therapy and did a lot of reading, arts and crafts and watching movies. Her favorite part was getting to request food from outside the hospital.
On January 24th I received a call from the transplant team and on January 25th, just 21 days after being admitted into the hospital, Lana was given the most amazing gift ever....a new heart. She did very well and was released from the hospital the week of Valentine's Day to our apartment in Little Rock. By Easter we were back at home in Arkansas and just traveled down for her frequent appointments.
She has done so well and started her sophomore year on schedule with the rest of her friends and classmates and has only been sick one time since her transplant. It was simply a flu like cold. She started her junior year of high school two weeks ago and tried out for her high school pageant and has made the top 20 and will get to compete for a scholarship at the end of September in the "Miss BHS Pageant". The old saying "You've Come a Long Way Baby" pops in my head when I think of where we were even a year and a half to two years ago.
Story by Lana’s mom, Jennifer – Arkansas
Bilan, born 2010