Sweet Caroline

Sweet Caroline

Thursday, February 9, 2012

Sucker Punch

[caption id="attachment_130" align="alignright" width="448"] Brit's smile could light up a room[/caption]

Four years ago today, Brit lost a hard fought battle and I lost a piece of my heart. When Kubby, Brit’s nurse who terminated support, looked at me and nodded I was certain that the hardest part of my life was over. I had watched Brit suffer for weeks, I held her hand as she left this world…does it get any worse? Yes, it does. Every day since, I have had to wake up knowing that Brit fought courageously for her life and nearly won only to have been sucker punched by Baxter International, Inc while countless regulatory agencies stood idly by.

"It is now well-known that in order to increase corporate profits, Baxter International and SPL decided to purchase their heparin (referred to in the companies’ own internal records as “the cheap stuff”) from an overseas Chinese facility that the companies knew had never been inspected by the U.S. FDA or any Chinese regulatory officials. (When the Chinese plant was finally inspected by the FDA after the heparin contamination crisis, multiple violations were found, resulting in an import ban.) It was also uncovered that Baxter and/or SPL completely failed to establish and conform with quality/purity specifications, including an impurity profile, failed to understand, let alone control, their supply chain, and did not conduct the testing that they promised the FDA they would conduct. The specific individuals who added the contaminant to over half of the nation’s supply of heparin, however, have never been identified."

Brit was making a remarkable recovery from subdural empyema (pus on the brain sometimes caused by sinusitis). Brit underwent two surgeries with no complications that successfully removed the pus. After the procedure, physicians inserted a PICC line for antibiotic medication to prevent post-surgery infection. The PICC line was flushed with heparin to keep the antibiotics free-flowing. A blood thinner was an essential aspect of her treatment; unfortunately, for Brit Baxter International thought increasing their profit margins were more important than her life.

Doctors were very impressed with Brit's response to surgery and therapy.  In less than a month, her doctors and therapists agreed Brit was stable enough to finish recovering from home.  On the day she was supposed to go home she spiked a fever and was returned to the PICU.  Blood was immediately taken but none of the cultures ever grew...doctor's did not know what to make of the unexpected and unexplained deterioration of her condition.

Britney’s death was painful and humiliating but she was dignified and courageous. She lost control of her bodily functions, spiked very high fevers, experienced terrible nausea and vomiting, rash, and was in pain I would not wish on my worst enemy. The doctors could not identify the infection that was causing the fever so in her last days Brit endured countless painful and scary medical procedures--all before having a complex seizure that required doctors to put her into a medically induced coma she would never wake up from. On her last day with us, Brit’s heart stopped several times. The first time the doctor was able to revive her with just compressions but subsequent episodes required the assistance of multiple crash carts. As a last effort to save Brit, doctors decided to put her on ECMO (similar to heart-lung machine) to give her heart a break while her body was metabolizing the medicine that put her in a coma. By now Brit’s body was so fragile the surgery had to be performed in her PICU room as she was not stable enough to move. Brit survived the procedure but it did not help. The doctor called my family into a conference room and told us despite Brit receiving the assistance of numerous forms of life support including ECMO her vitals were neither improving nor stable. Despite their best efforts, doctors could not increase Brit’s blood pressure…rapidly falling blood pressure was one of the adverse reactions to “the cheap stuff.” As was: high fever, nausea, vomiting, and organ failure.

My dad was in a hospital across town being treated for his own health issues. We could not get him transferred to Brit’s hospital. So my mom went to tell him, in person, about Brit’s rapidly declining condition. And we made the unthinkable decision, to terminate life support and allow Brit at the age of 9 and ½ to leave this world. She still slept with her baby blanket every night.

To me anyone who was involved with the heparin contamination is responsible for not only murdering my sister but also for torturing her. Who does such a thing? Brit was a vibrant and loving 9 and ½ year old. She was an “old soul” with an infectiously warm smile and caring personality. Brit danced like no one was watching and loved like she had never been hurt. At 9 and ½ years old she embraced life…I often wonder what her passion for life would like as a teenager. She would be 13 years old now, but instead she has been without life and without us for 4 years. She was not able stand up to my wedding, meet her three nieces or her youngest nephew, attend middle school, or participate in countless other activities.

I miss Brit terribly and it pains that she suffered so during her last days on this earth. Please share Brit’s story and put a face with the need for corporate responsibility.
In loving memory of Britney Nicole Wielgus August 6, 1998-February 9, 2008...you live on in our hearts.

Tuesday, January 24, 2012

Cruising

Raising a child who is labeled by medical professionals as "failure to thrive", "developmentally delayed", and "medically involved" is exhausting and emotionally taxing.  Don't get me wrong, I love my daughter and think she is amazing. Her smile lights up a room, she is very happy, and she tries harder than anybody I have ever met.  But her care is exhausting.

Caroline receives five hours of Early Intervention therapy every week, she is followed by seven specialists, our insurance regularly denies payment of claims which means hours must be spent going through the appeals process, trying to feed her by mouth is a long and frustrating ordeal just as it to feed her using her feeding pump in public.

Caroline started standing on her own yesterday, today she started cruising furniture.  I am so proud of her accomplishments because I know how hard she has to work to reach milestones that just come naturally to other children. Tonight, I want to celebrate Caroline's accomplishments and be her mom...tomorrow, I will return to being her care coordinator.