Stories

Jessica

Tetralogy of Fallot. Two surgeries. 6 months to correct VSD and Stenosis at pulmonary valve. 5 years old pulmonary valve replacement.

Jessica was born on April 25, 2003. She was diagnosed two days later by Dr. Riopel with Tetralogy of Fallot. The defect she was born with has four components to it. He let us know that she would need open heart surgery but they would want to wait until she was a little older and stronger. Since her oxygen saturation levels were in the high 90’s we could take her home. With the stipulation that we did not let her get upset and cry a lot. If she got agitated she would turn blue due to lack of oxygen. We only saw this two times.

We were seeing the pediatrician about every other week until we went to see Dr Riopel for the first time. We were set up to see him once a month to keep an eye on her little heart and oxygen levels.

Jessica was doing great. A little spoiled since we were not allowed to let her cry. She was adjusting well to the monthly heart appts and we did not see much change in her oxygen levels until October of 2003. Dr Riopel advised that the blockage had increased and they would need to do a heart cath. So we met Dr. Stern at the end of the month for her heart cath. It was determined then that we needed to go ahead and have the surgery since the stenosis had increased. Her oxygen levels were in the 80's and were not getting any higher. We met with Dr Watts that day and he explained what he would need to do to fix our little girls heart.

She had her open heart surgery on November 4, 2003. She was in the hospital for 14 days. I could tell that her body was getting more oxygen when I saw her the first time in the CVRU. Even with all the tubes and IV’s and what not she looked really good. The bluish gray tint to her skin was gone. She did develop fluid on her right lung the morning after surgery. Dr. Watts had to put in another chest tube in before she was moved out of CVRU to the floor.

We had another hospital visit in April of 2006 when we were admitted to CMC because she was having breathing problems. She had been sick for a couple of weeks. She had been through several chest x-rays and blood work. Possible bronchitis or pneumonia. Antibiotics were not helping. They even did blood cultures to make sure it was not a bacterial infection of some sort. On week three of her being sick she was admitted to CMC. The 2nd night in the hospital Jessica coughed and her face turned a deep red color. I knew something was not right. This caused her oxygen levels to drop quickly. She was immediately put on oxygen and her condition kept getting worse. Within an hour or so they were getting ready to move her to the PICU. They needed to put her on a constant flow of Albuterol in order for her to breath. We were in the PICU for about 24 hours. We were released a day later. They finally said it was viral pneumonia and set us up with an Asthma & Allergy doctor. Which latter we found out she is allergic to about every tree pollen going and that is what started this whole adventure.

Jessica was on a once a year appointment schedule with Dr Riopel. We had noticed in the fall of 2007 that Jessica's arms & legs would feel like ice cubes most of the time and really clammy after she had been running around for an extended period of time. She was not able to run and keep up with her cousins anymore and she was very winded after playing outside. We brought this up to Dr. Riopel at her yearly visit (Jan 08) and they scheduled a lung profusion test. This would provide them with an idea of the oxygen saturation levels in each lung. It was a little frustrating because she had the heart defect and asthma on top of it. It made it difficult to figure out what was causing her to be so tired and winded after playing for a short period of time? The lung test came back within the expected ranges. However, we were switched to an every 6 month schedule and was set up to come back later in the year. The second appt in 2008 uncovered that Jessica’s stenosis had increased considerably. This put the wheels in motion for Jessica’s 2nd open heart surgery.

She had a heart cath on August 8th with Dr Stern. He was able to open up some of the narrowing before her pulmonary valve (flap) with an angioplasty. However the back flow of blood into her heart was steady and the right side of her heart was slightly dilated. He explained that her right side of her heart was pumping at a reduced capacity because of the back flow. Her little heart was working double time to keep up. Currently no damage had been done to her heart. Her numbers from her heart cath were pretty good. However the symptoms that we have seen since the fall of 2007 were a concern for Dr Stern & Dr Watts. Each child's body responds differently to the back flow of blood into their heart. We did not want to wait until the heart had been damaged because of the extra work it had to do

Once we sat down with Dr. Watts and discussed all the if’s, and’s and but’s about replacing Jessica’s pulmonary valve. We had a big decision to make. We could leave her heart as is and start an every three month appt schedule with Dr Riopel or go ahead with the pulmonary valve replacement. We knew there was not any damage to the heart muscle at this point and really didn't want to wait until damage had occurred. She had her second surgery on September 9, 2008. This hospital stay was only 4 days and she is doing wonderful. More energy than I have ever seen her have before. We are back on the once a year heart checkups. I thank God everyday for Sanger Clinic being right here in our hometown of Charlotte, NC.

My name is Connie vandenBosch and I am Jessica's mom. If you wish to contact me you are more than welcome to e-mail me atcpwhitty@gmail.com.

http://www.caringbridge.org/visit/jessicaw1