Kalila, born 2008I will never forget that moment in the ultrasound, with the picture of her heart on the screen, when we just knew something wasn't right. We were referred to a perinatologist, who diagnosed our little girl with Tetralogy of Fallot. We were then referred to All Children's Hospital in St. Petersburg for monthly fetal echos.
It seemed like every visit, her diagnosis changed. It went from TOF with pulmonary stenosis to TOF with pulmonary atresia, then to TOF with MAPCAs.The cardiologist told us that they knew she had TOF, but were unsure about her pulmonary arteries. We were told she would need a series of surgeries, possibly immediately after birth. My husband and I are both nurses, but everything is different when it's your child. I was absolutely terrified and of course, the pregnancy hormones made it worse. I cried A LOT.
We were told I must deliver her at Bayfront Medical Center, 1 1/2 hours from home, so she could receive the high level care at the neighboring All Children's NICU. After a few bouts of preterm labor, I was admitted. I was induced at 37 weeks, and she was born in the OR with a full NICU team. The neonatologist told us that she might not be breathing, so they had an intubation tray ready. To our relief, Kalila Bryne was born October 9, 2008 at 2:01 pm, pink and crying. Her 02 sats were only 75% and after holding her for a quick second, she was transported to the NICU. She had some problems eating and gaining weight, and she had a NG tube for a short while. After many echos and a cath, it was determined we could wait until she was about 4 months old to do her first surgery. She came home almost 2 weeks later and with a pulse oximeter.
Every time we had a surgery scheduled, she would come down with an illness right before. Maybe it was God's way of telling us that she just wasn't ready.
She finally had her first open-heart on May 13, 2009 at 7 months old. I will never forget the huge lump in my throat and knot in my stomach, as I handed her over. At this point, I knew her life was in God's hands and the hands of her wonderful surgeon, Dr. James Quintessenza. I prayed and prayed for a successful surgery, and those hours in the waiting room, seemed like days. She was a fighter and pulled through.
Her next surgery, a much more extensive one, was scheduled for October 14th so she could be home for her first birthday. However, God had other plans. She woke up one morning in September-pale, lethargic, and puffy. I knew something wasn't right, so off to the pediatrician we went who agreed that she just didn't look right. A call was made to the cardiologist, and he requested we come immediately. When we arrived, her sats had dropped into the 60's and she was admitted to CVICU. A bunch of tests were run, and the echo showed the BT shunt had narrowed to the size of a thread. She was kept inpatient until her surgery on September 23rd. She was still intubated due to endotracheal bleeding, when we saw her after her 6 hour surgery. I have never felt so helpless in my life. Amazingly, once again, she was a little fighter. She was discharged 1 week later. As of her recent echo, her heart looks great! She will need another surgery to replace her pulmonary valve, but Dr. Q is hoping to get 7 years out of her current valve.
We call her "our little miracle." We feel so blessed to have her, and everyday with her is precious. It really puts a whole new perspective on life. Just like most of the "heart kids," she is a true blessing to all that know her. It seems they all just have this special gift. Kalila is the sweetest, most loving child, and you'd never know she has a "special heart." She is and always will be our hero!
Story by Kalila's mom, Shannon - Florida
Kyla, born 2004
Julia, born 2005