‘I looked over at my beautiful baby girl, her blue eyes staring back at me. ‘I’m going to get through this.’ Fighting for my life was the only option.’: New mom survives Guillain-Barre Syndrome, ‘I’m grateful to be alive’

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“‘I don’t think you have a pinched nerve,’ the ER doctor said. It was 3 in the morning and I’d driven myself to the hospital because of severe pain in my neck and weakness in my legs. ‘I’ll get you something for the pain, and I’ll call a neurologist to come take a look at you. We’ll go from there, okay?’ The smile on his face was comforting. I nodded. Though I was nervous, I was glad I’d trusted my intuition to come in. The pain and weakness worsened by the minute. What started out as a tiny tingle in my fingers a few hours before, now – I could hardly walk.

‘I think you have Guillain-Barre syndrome,’ the neurologist said very quietly. I’d never heard of it, but the look on his face told me it was serious. He explained that Guillain-Barre, or GBS, was a rare autoimmune disease – basically my own immune system was attacking the nerves in my body, causing paralysis in my limbs. I needed to be admitted to see if things got any worse. He warned me while some cases are mild, some are more severe. ‘You could end up completely paralyzed. You may need to learn to walk again.’ I couldn’t even fathom what he was saying to me. I was 26 years old, and just given birth to my daughter Casey three weeks before. Other than recovering from my C-section, I was completely healthy. I always had been. ‘I can’t stay in the hospital. I need to go home and take care of my newborn.’ ‘Call your family, and tell them they need to come here, right now.’ the doctor said to me. Everything after this moment was a blur.

I was admitted to the hospital and moved to the Neurology ward. My family arrived shortly after with our baby girl. I deteriorated by the hour – the pain intensified and the weakness continued to spread through my body like wildfire. Nurses pumped me with heavy narcotics, which crushed my dream of continuing to breastfeed my daughter. Not even 48 hours later, the paralysis reached my diaphragm and I could no longer breathe on my own. I was rushed to the Intensive Care unit and put on life support.

For the next two and a half months, I remained paralyzed from the neck down, trapped in my own body, breathing through a tube in my throat in ICU. Even though I was paralyzed and couldn’t move, I was in the most excruciating pain I’d ever been in. Strong narcotics did nothing. What should have been the happiest time in my life, was now a tragedy. A brand-new mom, I should have been at home taking care of my baby. Instead I couldn’t even hold her in my arms. I couldn’t reach out and touch her. On a ventilator, I couldn’t even say I love you. I dreamed of being a mother my entire life. Then in an instant it seemed, it was taken away.

Intubated woman with Guillain-Barre syndrome lays in hospital bed with her baby laying on her chest
Courtesy of Holly Gerlach

For a long time, I believed I would be in this vegetative state for the rest of my life. I was mentally and physically broken. Tiny glimmers of hope kept me going. Like when I moved my finger for the first time, and the time I breathed on my own for 30 seconds with the ventilator off. ‘As soon as she is able to breathe on her own for 48 hours, she can come off the ventilator and be moved out of ICU,’ our doctor explained. The doctors rarely spoke to me, but I could hear everything being said. I looked over at my beautiful baby girl, her big blue eyes staring back at me. ‘I’m going to get through this. I’m going to get back to you Casey.’ Fighting for my life; for a future with my daughter, was the only option I had. 

Newborn lays asleep swaddled in white blanket
Courtesy of Holly Gerlach

For weeks I practiced breathing on my own. It was like running a marathon. Sometimes mere minutes left my hyperventilating and crying. ‘I’m never going to be able to do this!’ I cried. It was the hardest thing I’d ever done. But I kept trying. And over time I improved. I progressed from a few minutes, to a few hours, to a full day. Finally, I got off the ventilator and moved out of ICU. I was still mostly paralyzed and had a long road ahead. 

But now, a flame grew inside of me. I spent nearly three months in ICU. I learned how to breathe on my own again. I had survived the impossible. I had this strength inside of me that I didn’t even know existed. Even though my body was incredibly weak, I felt mentally stronger than ever. 

Mother with Guillain-Barre syndrome sits in hospital bottle feeding baby in her lap
Courtesy of Holly Gerlach

For the next two and a half months in the hospital, I did intense physiotherapy. I learned how to use my body again, how to type, how to write, how to hold my daughter in my arms. I learned how to hold cutlery, how to feed myself, how to do my makeup and brush my teeth, etc. Then learned how to walk again, like the doctor said. Each step forward felt heavy, impossible, but I kept going. There were moments I wasn’t sure I could do it. But with determination and perseverance, I did. I progressed from wheelchair to walker, to cane, to walking on my own. After a 126 days total in the hospital, I finally returned home. It was one of the happiest days of my life. 

Woman with Guillain-Barre syndrome stands smiling outside on walker
Courtesy of Holly Gerlach

Back at home, I continued on with my recovery. I was walking on my own, but I still struggled with stairs, walking for long periods, and squatting down to pick up my daughter. I knew if I wanted to get any stronger than I was, I would need to put in a ton of work. My recovery was my responsibility; no one else’s. I knew I would not get any stronger if I sat around on my couch. I started going for walks every day, slowly strengthening my legs more and more over time. Then I moved on to a gentle yoga. Seeing myself improve as the weeks went by, once again showed me that I was capable of so much more than I initially thought I was. After that, I started running. Many times, I would have to stop from the pain and take a break for a few days, but then I would try again. I discovered that from breathing on my own, from learning to walk again – to keep trying. To never, ever give up. And over time, I got stronger and faster. 

Next, I decided to try the at home workout Insanity, which again, over time, I grew stronger and stronger. And that’s what I continued to do. Eventually I made my way into a gym and started weight training. Now, 8 years later, I am stronger than I ever was before GBS.I am healthy and happy, a mom to a beautiful 8 year old girl. 

Woman with Guillain-Barre syndrome does stretch in gym
Courtesy of Holly Gerlach

Looking back on my journey, sometimes it feels as if it never happened. But it did, and it changed me for the better. Going through a rare disease and completely losing my independence in my 20s, made me appreciate all the things I can do again, like, walk, talk, and hold my daughter in my arms. It reminds me that life can change in an instant; that I need to live my life to the absolute fullest. I’m grateful to get to be a mother to my daughter again. I’m grateful to be alive.

Woman with Guillain-Barre syndrome stands smiling outside as she has her arms around daughter
Courtesy of Holly Gerlach

It turns out, getting GBS was the best thing to happen to me. I started volunteering with the GBS Foundation of Canada, to bring awareness to this rare disease, and to help others going through it. I wrote a book about my journey and made a YouTube video to inspire others not to give up. I know now, that I had GBS for a reason –to show others that with strength, determination and perseverance, you can overcome anything.

No matter what you’re going through in life, take things one day at a time. Learn to rest, but don’t ever, ever give up.”

This story was submitted to Love What Matters by Holly Gerlach of Finding Joy in Rain. You can also follow her on Instagram here and Facebook here.To watch Holly’s incredible recovery and transformation, check out her YouTube video.  Purchase her book Happily Ever after hereSubmit your story here, and subscribe to our stories here.

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