My name is Justin and my wife is April. Our Daughter Brie has severe heart defects requiring several surgeries. She also has a genetic chromosome deletion called 22q.11 or Di George Syndrome. In addition to her heart surgeries, she will face many other challenges related to her 22q. The cost of Brie’s care is quite large as you can imagine and many things are not covered by insurance. Any donations would greatly be appreciated. Our go fund me page was originally started by our friend Demetrica. Thanks so much to her and so many other friend for their continued support.
This is our story: We gave birth to our beautiful daughter Brie on December 19, 2014 which was just a few hours past her due date. She was just under 6 pounds. We were overjoyed, exhausted and overwhelmed this being our first child. A few hours after her birth, family began to gather. This is when things quickly began to change. Brie began choking on fluid and turned blue. The nurse took her from us to the hospitals NICU. There they suctioned her, gave her oxygen and started an IV. They also ran a chest scan. The doctor informed me that the scan was abnormal. The scan was sent for further review. A short time later the doctor told us that her heart was not normal and she would need to be transferred to Shands at the Univ. of Florida. Our little girl was going to get her first ambulance ride and she wasn't even a day old. I followed the ambulance to Shands. The rest of our families stayed with my wife April who was in the process of being discharged. My wife and are families joined me at the hospital about an hour later. April and I were able to have some time with Brie before the doctors brought into a room for a conference. The doctors told us that Brie did not have a pulmonary artery (Pulmonary Atresia), was missing a valve going from the pulmonary artery to the heart, had a hole between the chambers of her heart (Vetricular Septal Defect), and MAPCAS (Major Aorto-Pulmonary Collateral Arteries). She has 5 small MAPCAS which run between her heart and lungs. The doctors told us that there was a 50% chance that the she could have 22q.11 syndrome. We had never heard of 22q. The doctors gave a brief overview. We were told that she would have developmental delays and have learning disabilities. We were told she would need several surgeries. They said that there was a chance that she would not be a candidate for surgery and would possibly need a heart and lung transplant. We were devastated by all that our little girl was facing. To be quite honest we were overwhelmed by what we were facing as well. After crying and crying, my wife and I met with our families and explained to them what we had been told. We returned and spent time with our little girl Brie. This was our experience on are first day as a new family.
This is a brief summary of what has occurred since. So far we have been lucky in that her oxygen levels have been stable enough that she has not needed immediate surgery. We are being told that she will probably have her first open heart surgery between 1 and 1.5 years of age.
Brie spent about 2 weeks in NICU before we could bring her home. We would have to keep an eye on her heart using a monitor which measures her heart rate and oxygen saturation. At about 2 months old she had a heart catheterization to better understand what her heart looked like. She was intubated for the procedure and was hospitalized for 5 days. The doctors said she will need 3 open heart surgeries and several more less evasive surgeries if all goes as planned. They also confirmed that she had 22q.11 / DiGeorge syndrome. This was a very difficult time for Me and April. One of our biggest difficulties has been feeding Brie. She was not eating as much as she need to because she tires easily. Her 22q also affects her ability to digest and hold food down. When Brie was about 6 months old she had a G-tube (feeding tube) put in to help her gain weight. She was intubated again and was in the hospital for 5 days. Since the G-Tube was put in she has gained much more weight. She currently is about 15 pounds. The doctors said they would like her to between 16-20 pounds before they do her first surgery. We currently see her many doctors monthly (She has about 8). Brie also attends physical therapy to help strengthen her.
- Kristen Pilch
- Alexis Rotkowitz
- Michael Carnelli
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