Have Hope, Love Big and Be Kind – One Patient’s Life Lessons Learned at Lurie Children’s

July 25, 2019

School, church and the gym are all places one thinks of as a “third place,” a place where someone spends considerable amount of time that isn’t home or work. A hospital isn’t typically someone’s third place but for Melissa Hayden, 27, it has been. Diagnosed with hydrocephalus, scoliosis, thoracic outlet syndrome and an extremely rare genetic disorder that impacts the entire body called FKBP14 related Ehlers Danlos Syndrome, Melissa has grown up at Lurie Children’s. Recently married in November, Melissa, an accountant, just traveled to Alaska with her husband on their honeymoon, loves to cook and sew, and is hoping to buy a house and get a puppy in the next year. She says, “I truly live each day to the fullest. I know tomorrow isn’t guaranteed and so I pack as much happy as I can into every single day.”

Melissa shares below how Lurie Children’s and the staff that have cared for her over the years have impacted her life.

  

Hope, love and compassion: things I experienced every time we walked through the doors of Lurie Children’s (formerly Children’s Memorial Hospital). I grew up here and have walked in and out hundreds of times, sometimes scared, sometimes sick, but always knowing I would be with the kindest people caring for me.

When you have a laundry list of conditions, one of which is so rare you are the 10th person in the world to be diagnosed, and when you’ve had 12 brain surgeries and three spinal fusions among many others, you become familiar with the sterility and monotony of hospital procedures. You know the drill before every surgery: the packing, fasting, early drive to the hospital while your stomach growls and your mouth feels dry, check in for a hospital bracelet, talk to dizzying amount of doctors before they wheel you back to the operating room. The whole process sounds, and could be, very sterile and cold. But the angels who work at Lurie Children’s make it a place of hope and compassion, despite some of the very scary things happening to so many tiny bodies.

I grew up learning to walk holding the railings of the hospital’s hallways. Every year my doctors would ask how school was going, about the concert I had, or how my graduation went. Nurses would recognize me in the operating room and ask how I was, how my dog was, or how a recipe turned out that I had told them previously I wanted to try making.

One of my favorite anesthesiologists was a motorcycle rider, and after a particularly rough surgery, he brought pictures to show me his motorcycle, to give me a bit of distraction while I was waking up from surgery. I will always remember that because I was so surprised, even in my groggy post-op state, that he took the time to do that when I am sure he was very busy.

My genetics counselor helped me find a diagnosis after 24 years, and she had to handle me through my slightly sassy teen years (yikes!). My neurosurgeon went above and beyond to help keep me safe, from researching options in case of emergency so that I could go on a trip to Spain safely, to helping me handle a crisis out of state, and eventually getting me an ambulance to Lurie Children’s from Green Bay, Wisconsin to have emergency brain surgery the next day.

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Melissa with her neurosugeron Dr.DiPatri

  
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Melissa and Allison Goestch, her genetic counselor

 

 

I had nurses who would rig up ways for me to communicate that I needed help (cups with IV plastic caps make excellent “maracas”) when I was intubated, and ones who’d find me extra snacks when I got admitted at 10 p.m.

The staff at Lurie Children’s have made it a place of hope and love, despite pain and fear. They made me feel like I wasn’t just a patient on their board, one of many, that day. They gave me distraction at a time when I needed it most. Truly every person I came into contact with was an integral part of where I am today, and I couldn’t be more thankful to Lurie Children’s.

Through the years, as I stepped into the adult world, I became even more grateful to what Lurie Children’s has given me. I wanted to give back as much as I could. I started helping patients learn how to advocate for themselves because of what I learned at Lurie Children’s. I’ve traveled to Seattle, Washington and Irvine, California with my genetic counselor to share my diagnosis journey and how important it is to be a self-advocate, and also integral a genetic counselor can be in the process.

     

I began volunteering through the Lurie Children’s PeerWise program to help patients and their families prepare for surgery or manage a chronic illness. Getting the opportunity to give families a sense of peace or control over very big and scary things has been a privilege. After every call with a family, I hope that I have given them some clarity over what is to come, or that I have helped give a patient a few tools in their pocket on how to navigate growing up with a chronic illness. I will be forever grateful to Lurie Children’s, and it will always be a part of who I am. I will carry the lessons I learned there with me for the rest of my life: have hope, love big, and be kind.

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Melissa has always had a passion for giving back. She started Dance Marathon at her college St Norbert in De Pere, Wisconsin and even “crashed” the event last year on her wedding day!