Making Ever proud
Providing care that transforms a family's life
“Knowing that you have a team that loves your child as much as you love them is everything. Having to watch her get wheeled away time and time again, at the Emergency Department, at the hospital for procedures and tests, is gut-wrenching. I absolutely love her team. I trust Ever’s life with them every single time.” – Lauren Loftus, Ever’s mom
Ever Loftus was born at 36 weeks, weighing in at just over 4 pounds. At her 20-week scan, Ever’s mom, Lauren, attended a routine prenatal checkup and ultrasound. She had no idea once Ever was born, they’d be staying at the hospital for another 80 days.
“I just thought we were getting more imaging,” Lauren recalled. “The ultrasound tech didn’t say anything but called in the doctor, who pointed to the screen and said, ‘There it is. There’s the hole in her heart.’ I was in shock. You go in not thinking you’re going to be the one finding out hard news.”
Ever was born with tetralogy of Fallot, a complex form of congenital heart disease resulting in four main heart defects. Her diagnosis usually requires at least one surgery in the last year of life and lifelong monitoring due to irregular heartbeat, exercise intolerance and reduced heart function.
Ever was just over 1 month old when she had her first open-heart surgery to patch the hole in her heart. Because of her size, the surgeon had to use a magnifying glass to operate, and her chest was left open for a full week after surgery.
At 1 year old, Ever had her second heart surgery to place a stint in her left pulmonary artery, which took place in a catheterization laboratory. Her doctors also placed a feeding tube because Ever was not growing. She was only 10 pounds and not crawling or walking.
“We knew because Ever was a preemie and had open-heart surgery, her growth might be slower, but she wasn’t progressing,” said Lauren. “We were seeing other heart babies thrive, and Ever wasn’t. Other kids on the cardiology floor with Ever were now walking and talking.”
At the time, Lauren and Ever resided in Oklahoma. As a Texas native, Lauren was familiar with Cook Children’s reputation and wanted to transfer all of Ever’s care to our system. She started with Alexandra Garza Flores, M.D., in clinical genetics.
After extensive testing, Ever was diagnosed with Cornelia de Lange syndrome, a genetic developmental disorder with a wide range of physical, cognitive and medical challenges.
“The life I thought Ever would have would be different,” Lauren admitted. “From our first appointment, we fell in love with Dr. Garza Flores. She sat with us for over two hours. The office had already closed, but she continued to answer all our questions. She was the one who told me that Ever would be in a wheelchair and live with me for the rest of her life. When I got the news, I just knew this was the journey I was supposed to walk with Ever. I knew that I was meant to be her mom. The Lord had given me Ever; she was my gift. Whatever it was, I was ready to take it on. I was ready to fight for her.”
From doctor’s appointments to haircuts at Mirror Mirror salon in our Fort Worth medical center, all of Ever’s care team is now at Cook Children’s. And that list is long, including cardiology, otolaryngology, dietician services, gastroenterology, genetics, neurology, Child Study Center, speech therapy, feeding therapy, physical therapy and occupational therapy, through both rehabilitation and Cook Children’s Home Health.
“Knowing that you have a team that loves your child as much as you love them is everything,” Lauren said. “Having to watch her get wheeled away time and time again, at the Emergency Department, at the hospital for procedures and tests, is gut-wrenching. I absolutely love her team. I trust Ever’s life with them every single time.”
Lauren wholeheartedly believes Cook Children’s has forever changed her and Ever’s lives for the better. She is confident in the care Ever receives. Eventually, Ever will need another open-heart surgery to replaced her pulmonary valve. And while her team focuses on getting Ever closer to age 10 before this surgery, Ever and Lauren are only concerned with Ever celebrating an incredible year in kindergarten. She is currently part of an integrated classroom that allows a nurse to attend school with her.
“I’ve always wanted to look back on these times and make Ever proud of me,” Lauren said. “I started running marathons for her. It’s been really special, running together, as I push her in her jogging stroller. When you ask your child to overcome the impossible, you feel like you need to hold yourself to those standards as well.”