Overcoming My Biggest Fear

Today, on Caroline's third birthday I am overwhelmed with emotion as I look back on all that we have been through and all that she has accomplished. My biggest fear entering motherhood was raising a child with special needs. Entering parenthood, I had already felt the pain of losing a child when my baby sister, Britney, passed away at the tender age of 9 and half (she was 18 years my junior). Thus, I became a mother already knowing and understanding that each day with any child I welcomed into this world was a gift and that tomorrow is not promised.  And to deal with the immense weight of that reality, I worked very hard to create an environment that would allow my children to thrive but also to experience life to the fullest at a young age.  For me the fear of raising a special needs child was two fold: I did not want to see my child live a life filled with pain and discomfort; and I did not know how to create an environment that allowed Caroline to experience life to the fullest given her medical and developmental challenges.

In a previous blog, I explained the challenges of bonding with Caroline as the pain of losing Brit was still so fresh.  And for that reason, it took me awhile to get to really know, Caroline. But now that I know Caroline and I see all that she is capable of I know how to create environment that allows her to thrive and makes her happy.  Caroline has an infectiously happy and curious personality.  Her lack of boundaries allows her to wander in the hearts of many. She is tiny but mighty; calm but excitable; distant but loving; and intense yet passive.  Raising child filled with these contradictions is both rewarding and challenging.  I have realized that by embracing Caroline's passions and following her lead, I can not only provide her the tools she needs to thrive but also the experiences that make her happy.

[caption id="attachment_941" align="alignleft" width="300"] Caroline at the pet store to see frogs as part of her birthday celebration.[/caption]

Today, on Caroline's 3rd birthday I realized that big party was not the appropriate way to celebrate.  John and I spent a lot of time thinking about what Caroline was interested in lately and crafted a weekend around her interests.  Caroline LOVES pizza and garlic bread so we went to pizza place for lunch; we bought her a toy frog that sings and spits water for the bath and allowed her to take an extra long bath, we went to the pet store to look at frogs (her newest obsession) and have plans to go swimming (Caroline has always loved to swim) and to go see a movie (Caroline loves popcorn, music and the bright colors in movies--my little sensory junkie).

Caroline has helped me to not only overcome my biggest fear of parenting a medically involved child with special needs but has showed me how rewarding it can be.  She has taught me that the simple pleasures in life should not be overlooked and just because today is a bad day doesn't mean tomorrow has to be. Caroline has also taught me the importance of asking for help--I am so thankful to the many amazing therapists, teachers and doctors who have helped Caroline overcome so many challenges and achieve so much. Self interest, rightly understood, I am also thankful to these same individuals for offering me perspective, a shoulder to cry on, or a friendly ear as needed.   I understand it takes a village and I am so thankfully for the village that has contributed to and shares Caroline's successes. And of course, when considering all those who have contributed to Caroline's success and growth I cannot, thank my husband, John, enough for always seeing Caroline as perfect; Vivian for being an understanding big sister, my dad for spending months taking care of Caroline and demonstrating a tenderness and patience I did not know he was capable of--there have of course, been many others who share Caroline's success and who have supported our family during the dark times and to each of you, I am forever thankful.

Happy 3rd Birthday, Sweet Caroline--I can't wait to see what you will accomplish this year!

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.