Pregnant with Guillain-Barré syndrome

Cheryl Perkins lives in Adrada de Haza, a small village in the north of Spain, with her partner, Daniel, 19-month-old son, Luca, two dogs and the cat. Cheryl’s roller coaster of 2020 began whilst she was just over three months pregnant with their second child and living in full lockdown due to COVID. She shares her story with us to give some hope to other mothers in the same situation that they too can get through the darkest of days.

It was towards the end of May that I started to get severe back pains and was unable to sleep. Being pregnant I put it down to sciatica and bad sleeping positions but on May 29th I was at home alone with Luca and suddenly found I could hardly climb the stairs with him due to a weakness in both my legs. I pushed myself and went up on all fours trying to convince myself it must just be a trapped nerve. I persevered all morning but then found myself on the toilet unable to stand up. Having Luca there I knew I had to get up so I grabbed onto anything I could and then using the walls I managed to get into our garden where I could sit down, and he could play safely. Daniel came home and we called the emergency doctor who told us to get to A&E immediately.

The diagnosis

When we dropped Luca off at his grandmother’s, I didn’t even give him a kiss as I couldn’t move from my chair, and of course I had no idea that I would not get to hug or kiss him for another four months! The staff at our local hospital in Aranda de Duero were baffled by my symptoms and within a few hours made a call to the University Hospital in Burgos (45 mins away) where they spoke to a neurologist who instructed them to send me directly to them in an ambulance. The neurologist saw me and after a few physical tests explained to me that they thought I had this thing called GBS, but that confirmation would come with a lumbar puncture and an MRI scan. I had never heard of this illness, and it all seemed to be too serious to be real, I just couldn’t take it all in. What did it actually mean for me and my baby? My first night was spent in hospital worried sick about what was happening to us.

The following morning I was given the lumbar puncture, an EMG NCV test and the MRI scan and was immediately sent to begin treatment with plasmapheresis. To be honest, as scary as this was, I still had function in the top half of my body so I was convinced that because I had started treatment so soon, I would be back home with Luca within a week or two. The doctors had confirmed GBS within 24 hours, but they were at a loss as to what might have caused it until the blood tests returned to show that I had contracted Cytomegalovirus and that my body was still fighting this virus. It was apparent that the Plasmapheresis would not work until they had treated the virus and this was a much more difficult task due to the fact I was in early pregnancy. In just a couple of days I began to have real difficulty taking the peak flow test and suddenly I was faced with a neurologist explaining to me that he wanted to send me to the ICU to keep me under strict surveillance. I went from being scared to absolutely petrified I was going to die. I refused to go, convinced that if I went there, I would not come out. Finally, with much patience and persuasion from both the neurologist and my partner, I was sent to ICU. This was to be my new home for the next six weeks.

Intensive Care

Due to the highly unusual circumstances of being pregnant whilst contracting GBS I had a remarkable team including neurologists, virologists, physios, gynaecologists and the team of the ICU. The lead doctor, Dr Camilo, was to become my guiding light and hope for what was to become the darkest moment for me. Within a week I had deteriorated to the point where I was now totally paralysed including the left side of my face. Both my partner and I had been informed by the doctor that now they were fighting to save my life. They would do all they can to save our baby, but my life would take precedence.

No words could describe my feelings at that moment.

I was torn between fighting for my life to get home to my son but maybe at the cost of our little one yet to be born. They needed to put a camera down my throat to see what was happening, at this point I was beginning to panic at everything that was happening to me and needed to be sedated to stay calm. All I could think of was that I wasn’t going to make it and that I would never see my son again.

The next week or so I remained sedated as they discovered one of my lungs had also collapsed and they needed to re-inflate it. In this time I was visited by my parents who had been given special dispensation to visit me after flying over from the UK (due to the serious COVID situation I had only been allowed to see my partner) but of course I don’t really have any recollection of this visit as I was so out of it. I woke up with a tube in my neck, and now not only was I locked in the hospital but also locked in my own body. The pain throughout my body was excruciating but there were already positive signs, the physio had been continuously working with me to move my body, and now I was awake I could almost move my right arm.

The next few weeks were some of the hardest and darkest times of my life. I was on a ventilator, being fed through a tube and communicating by lip syncing, the only actual noise I could make was a clicking sound in my mouth which I sometimes needed to use when I didn’t have the strength to press the emergency attention button.

I needed to be moved regularly to ensure my lungs functioned without problems, to be bathed, and have bed linen changed. The hospital staff were truly amazing and tried their best to do everything with care, but it was impossible to block the pain totally. I could only take certain pain meds as I was pregnant and even those I took came with the warning that they had no idea how this would affect the baby.

I was encouraged to try and sit up every day but sometimes the pain was just too much, I couldn’t cry out or explain where it hurt, I could only grunt and make unearthly noises that left me feeling deflated and beaten. There were many points where I just wanted it all to end. I couldn’t think of anything but closing my eyes and it all stopping and then the guilt of giving up came, how could I give up and leave my son without a mum?

I had to fight but to do that I needed stronger pain meds so I could make my body move. I wanted to be hoisted into a chair, I wanted to sit up and try to move more. I needed stronger medication even to sleep and this all came with a risk to my baby. I felt like I had to choose my life with my son or my unborn baby. I spoke many times with a psychologist to help me come to terms with this choice but, once I had made the decision to fight come what may, I knew it was the right one. I spoke every day countless times to my baby to explain what we needed to do. This wasn´t just my fight but his too. We needed to do this together. I wasn’t going to lose him. We were both going to get home to Luca.

It wasn’t easy and there were many days where I just cried and wanted to give up. I consider myself extremely lucky to have been in the place where I was. The nurses, the assistant nurses, the orderlies, the doctors, even the cleaners all took a little extra time at some point maybe just to hold my hand, to make me laugh, to wipe away my tears, to put up photos of my family and friends to remind me that I was never alone in this fight. At every prenatal scan I had a room full of nurses so excited to see the baby (ICU is not generally a place where they get to see such beautiful images) and there were often many tears of joy from all as we saw him moving and heard that little heartbeat.

An amniocentesis showed that neither the virus nor the GBS had affected him so far. Nico (named after a close friend who, despite being diagnosed with terminal cancer, fought hard and stayed strong with a smile that radiated happiness and light) was a fighter like his mum, he wasn’t giving up. It was on. We were a team united, and we were going to beat this stupid syndrome whatever it took.

I feel I am very fortunate to be the type of person who has determination in spades. I have never been one to be told I can’t do something. I knew this would be my hardest battle yet and I was scared beyond belief that maybe I would not make a full recovery and I could be in a wheelchair for a long time, possibly forever, however if this was to be it then I would be a different kind of mum than I had planned but I would be a mum to my two boys no matter what!

The following weeks were spent learning to breathe without the ventilator. It’s funny how you can go from hating that machine to being convinced you can´t live without it. It’s extremely scary and there were times where I would have a panic attack and forget how to breathe and need to be re-connected. This was soul destroying and I needed a lot of support and encouragement to keep trying. Daniel was there every day for these battles and would cheer me on and keep me occupied so I didn’t overthink it and little by little it got easier and easier until one day (I had been asking Dr Camillo every day for about a week) he finally came in and announced that the trachea was being removed. Then the healing really seemed to kick start. Suddenly I got to drink water (the best feeling in the world), eat solid foods, sit up and skype with my parents, wheeled out of my room to look out of a window, watch tv series on my ipad, read books, my world opened up again and I was feeling much more positive.

Now that I knew Nico was growing healthily and fighting hard to come home with me, my determination lay in getting home to see Luca. I hadn’t seen him in over two months. We had done a couple of video chats but being only 19 months old he didn’t understand what was happening, only that his mummy was not there. It was breaking my heart. I needed to get out of ICU and this was my only goal.

Rehabilitation really begins

Finally after six weeks of fighting to save both my life and Nico’s, Dr Camilo gave me the all-clear to be transferred to the neurological ward where my rehabilitation would continue. I felt like I was leaving a family. It terrified me leaving that place where I had come to feel safe. The unknown was frightening, especially when I was still paralysed from the waist down having to be hoisted, still fighting the excruciating pain, still not able to move much at all independently.

I spent another month on the neurological ward having daily sessions with an occupational therapist and a physio. I still could not have my son visit because of COVID restrictions and I still couldn’t feel my son kicking or moving due to the paralysis and this weighed heavily on me. I had days where again those black clouds of doom would descend, and I just felt so down, wondering what on earth I had done for this to happen to me. How could I be so unlucky? Would I ever get my life back? How can I be a proper mum to my sons if I can’t even look after myself? I often turned to the GAIN page on Facebook to ask a question or read others’ stories to give me hope and guidance. Hearing that there were other mothers out there who had been through what I was going through gave me strength and I cannot thank them enough for their words of encouragement and support.

After a month of rehabilitation on the neurological ward I was then moved back to my local hospital in Aranda de Duero where my physio continued. I had a very brief cuddle with Luca in between the ambulance and hospital room and my tears flowed from both joy of actually being alive to enjoy this moment and sadness that I still wasn’t ready to go home. I was more mobile in bed but still unable to sit up alone or leave the bed unaided. It was my next physio, Elisa, who saw my depression and made it her mission to get me into a wheelchair so I could go home and recover with my family. She was an inspiration and with her by my side I worked tirelessly to get movement back in my legs so I could at least bear my own weight for a bit.

Homeward bound

We did it, and finally after four months of being separated from my family I was discharged to go home and continue my physio at a day centre with Elisa. I was finally home, in a wheelchair, but home with Luca, Daniel and our little Nico still growing strong.

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