The Heart of a Warriorette
It was Dec. 23rd, 2008 and I was 20 weeks pregnant. Brent met me at the hospital for a routine ultrasound. We were so excited. The doctor told us that our baby girl had a possible heart defect. We were devastated. We had it confirmed by a pediatric cardiologist, that our baby girl had pulmonary atresia.
After nine more weeks of echos and ultra sounds, we found out that we became a candidate for fetal intervention. We flew from Omaha, NE to Boston, MA to have fetal intervention to correct the pulmonary valve. Talia was the 11th baby to have this experimental surgery. We were excited, yet scared at the same time. The procedure was a success! Talia’s pulmonary valve was open and blood was feeding her lungs. But, just one month later, tests confirmed that the pulmonary valve had narrowed and blood flow had slowed to a trickle. Talia’s diagnosis was now pulmonary stenosis . . . but we still had hope.
Talia LaRae Krumbach came in to the world on May 5th, 2009 at 6 lbs. and 15 oz. She was pink, screaming and ready to fight. She had a heart catheter at one week old, BT Shunt surgery at two weeks old and was finally able to come home from the hospital at six weeks old. At three months, she had an emergency heart catheter done to open up a hole that they made in her ASD that had closed up. At four months, she had another heart catheter to check her heart pressures and to see if she was ready for the next surgery. She had the partial glenn surgery done two weeks later. This surgery was able to use the parts of the right side that were working. At seven months, Talia had the partial-glenn reversed and her pulmonary and tricuspid valves replaced with bovine valves. At nine months, doctors performed an emergency heart catheter to put a stent in her superior vena cava vein that was starting to narrow. So Talia has a full heart, it is just two of them are artificial valves. At 1 year, Talia had her fourth open heart surgery and her pulmonary and tricuspid valves were again replaced. At 15 months, Talia had her fifth surgery, doctors performed to replace the tricuspid valve once again, widen her pulmonary artery and her pulmonary veins. At 18 months, Talia had an echo and they told us her tricuspid valve wasn’t working again- so we flew to Boston and they put a melody valve in via catheter. She was the smallest person in the world to have had this done. They did another heart catheter there a week later to place a stent in her pulmonary artery, widen her pulmonary valve and also put a hole in her ASD.
After five surgeries and 8 heart catheters in less than two years, Miss Talia has proved she is a fighter. Multiple hospital stays have put her behind, but she is catching up. She goes to physical therapy twice a week and had made great progress. For medicine she is on lasiks, aldactone, diuril, aspirin, and lovenox. Talia is a laid back and happy girl that loves music and always wants to know what is going on.
If you saw Miss Talia today, you would never know the obstacles she’s had to overcome. Please keep her in your thoughts and prayers! “Her heart may be broken- but its full of twice as much love.” He bravery and strength is something for all of us to emulate.
You can follow Miss Talia’s life journey at www.totsites.com/tot/tlkrumbach