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normal delivery we took Breana home, then two days later we noticed she wasn't eating and her breathing was irregular. We took her to the ER and within 20 minutes she went into heart failure. Once she stabilized they transported her to Doernbecher Hospital in Portland, Oregon. After 11 hours of testing, we received a diagnosis; HYPOPLASTIC LEFT HEART SYNDROME; Brea's complete left ventricle was missing. (For more information on HLHS visit this link at the American Heart Association: Hypoplastic Left Heart Syndrome . By this point Brea was in renal failure and was not expected to live. We said our prayers and had a priest baptize her and give her last rights. That evening at 11pm we kissed our baby goodnight and possibly good bye. After a long stressful night, Brea's body had fought to survive and by sunrise the next morning she made a miraculous turn around. On the 6th day of her life, she was ready for the first of three open heart surgeries. The Norwood surgery went very well, it lasted 6 hours and Brea was home within 10 days. At 3 months old, we moved to San Diego, CA and at 6 months of age, Brea underwent The Glenn surgery at UCSD Medical Center. Again, another perfect surgery and recovery; she was home within 8 days. The last of Brea's surgeries, The Fontan, was performed when she was 2. Unfortunately, the surgery was not as smooth as the first two and Brea's suffered many setbacks due to numerous complications. Brea was hospitalized for more than 8 weeks. She was constantly leaking fluid from her chest tubes and the doctors did not know how to remedy this. A follow up surgery was attempted through her right side in order to scrape her lungs, hoping to trick the body into healing itself. Again, it did not work and because of the pain resulting from the surgery, Brea suffered a morphine overdose. She was quickly admitted into the PICU where she suffered two strokes and again we almost lost her. By the grace of God, our little fighter pulled through again. For 3 years Brea stayed home while maintaining a strict medical regimen and her health stabilized. When she was 5 years, Brea suffered chronic ear infections, bronchitis, and pneumonia. And that is when we noticed the strangest side effect; swelling. Her stomach blew up as if she was 9 months pregnant, her face was so swollen she couldn't see out of her eyes. Her ankles were so swollen you couldn't see them; they looked like stumps on feet. Every time she got sick, these odd swelling symptoms would reappear and increase dramatically. After 3 years of her being chronically ill and with no reason or solution, we moved to North Texas. She continued to be ill for the first year after our arrival but the doctors at Cooks Children Medical Center seemed to get the problem under control. This last January 2008, Brea started swelling again. Kids were making fun of her at school saying she was pregnant and she started missing out on her regular activities due to mobility issues. By May, we were at the doctor at least once a week trying to figure out was wrong. Brea had a cardiac cath in September which proved to be unremarkable; she was out of the hospital within a few days with little change. In late November Brea came home from school with her left arm so swollen she couldn't bend her elbow. We rushed her to Cooks where they found a sub-clavian clot; 3 to be exact. The hematologist came in, took one look at her and got a team of doctors including a pulmonologist for her lungs, an infectious disease doctor, a gastroenterologist for the stomach swelling, and of course her cardiology team to run extensive tests. There was confusion as to why a girl, even with HLHS would throw clots. She was promptly diagnosed with asthma from the pulmonologist and PLE from the gastroenterologist. PLE is a Protein Losing Enteropathy where her blood separates form its protein and leaks out into the tissue, mainly her gut. The PLE is a complication from the Fontan surgery, no one knows how or why it happens but the prognosis is not good. Losing her protein is why Brea has always been sick, it compromises her immune system and makes her susceptible to every bug and virus. Every year the entire family gets a flu shot, every two years we get a pneumonia shot and Brea also gets tubes in her ears. We keep our home as germ free as possible just as a preventative lifestyle. There is no cure for PLE, she has had a central line (port) put in so a home bound nurse can come and give her albumin (the protein she loses) twice a week for two hours. We are currently running tests to try to figure this disease out. Within the next couple of days, the doctors will be using the latest technology, a pill camera that will be able to show pictures of her entire digestive tract in hopes to that they can find the leak and a way to stop it. We have been blessed with an amazing team, especially our GI doctor who has provided new insight into Brea's condition. There is not much info out there regarding this illness so we are all learning as we go along. We are very blessed to have found a doctor who is willing and able to help us through this. |
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Breana's Story