Karen tells us about her daughter Andrea, the challenges of PWS that the family have faced together, and how Andrea is doing now as she reaches the age of 40.

This is my daughter, Andrea Agnew and on December 14th we celebrated her 40th birthday.

She was born with Prader-Willi Syndrome. Commonly enough for that period of time, she wasn’t diagnosed with PWS until she was between the age of four and five years old. Born prematurely by a planned c-section at just 31 weeks, she was believed to have developmental problems. However, due to the lack of medical advances back then, Andrea was treated for a completely different diagnosis. Suspecting that she may have something other than what we were told she was born with, her doctors did multiple skin biopsies in an effort to confirm her genetic disorder. Unfortunately, it wasn’t until the fifth one that she was confirmed to have this very rare syndrome.

We forged ahead to get as much information about PWS as possible, but the findings and resources were limited. We experienced all of the phases of this genetic disorder imagined along this journey, but the excessive weight was, by far, the most challenging.  Because the weight became such an issue, it was suggested that I send her some hundreds of miles away to a hospital to help get things under control. I couldn’t imagine being apart from my daughter for the lengthy time suggested, so I just continued to do my best with trying to provide the controlled environment. Even with all the challenges and setbacks presented us, we stayed the course until she graduated high school. All was seemingly going well until one month after graduation.

It was exactly one month following her graduation that Andrea was complaining of a stomachache one morning. As you may be aware, one common characteristic of PWS is the extremely high threshold for pain. The fact that she was complaining was alarming. After spending nearly 24 hours in the emergency room, we were told she had an incarcerated hernia and required emergency surgery. Our entire world changed at that very moment.

While in surgery Andrea went into respiratory failure. Following surgery, she was now in a coma and on a ventilator. On day eight she awakened from the coma, and the medical staff quickly scheduled a time for the following morning to remove her ventilator. I returned to my daughter’s room after alerting my family of the good news, but what happened next was earth shattering. Andrea was holding the tube from the ventilator in her hand and the alarms were sounding.

The nurse on duty was frantically attempting to reach the doctor to come and reintubate her tube as her blood pressure first began to rise and then she flatlined. A code blue was called while the doctors that were present began working intently on reviving her. Meanwhile the ventilator still had not been able to be reinserted, so the unimaginable happened. The medical staff instructed me to leave the room, because an emergeny tracheostomy was needed in order to safe Andrea’s life. Another code blue was called before they could rush her to the surgery room that was supposed to be planned for the next morning. She survived that trauma, and the next months were spent in rehab before she was able to return home.

That was over twenty-one years ago, and we are still thriving. We have multiple services provided by CICOA that allow us to continue our lives at home. We have an amazing staff of nurses through Joy Health Services that care for Andrea. Aprea and Aerotech supply her with oxygen and trachea supplies ensuring that she is stocked with her necessary equipment.

She has a supportive family including a sister, two brothers, and stepdad that love on her. According to medical opinions she wasn’t expected to live long, especially when we were presented with the added challenge of having a trach with Prader-Willi Syndrome which we currently face. We count our blessings knowing that this is a journey not a race, so we continue on this path with faith in God.

If you would like to tell your story please contact us at office@ipwso.org.

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Family smiling at camera.
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