Something to tell you…

…. I’m pregnant!

 

I never thought I would be writing something like this down it all seems so surreal even after 7 months.

 

For me, the road towards pregnancy has been a long, battling, personal struggle. I’ve never taken the time to believe something so incredible could happen to me.

 

At 22, lying in a hospital bed only just existing I would have screamed with anger at the person telling me at 29 you would be married with a baby on the way. Retraining my body to work both physically and mentally was what I thought my new life would now consist of. I didn’t really know much about the reality of a spinal cord injury and neither did my family. I had this idea that one day my broken, fragile body would be fixed. Night by night in hospital I would stare at the hospital ceiling and beg for a miracle to happen, so I could walk. Days soon turned to months, then years and my soul focus would still be to walk. I was always grateful for the movement I regained, my movement got stronger and so I overall started improving by seeing the bigger picture of my life.

Nelly since the day I knew him wanted children, he has that natural paternal bond and it was something I sadly crushed and pushed to the back of my mind for a long time. I selfishly only thought about what I really wanted at the time and that was to get my old life back and walk. Nelly, what he didn’t know was the closer we grew together through all those dark times, the more I cried, grieved a life what we both wanted and that was to have the perfect life with our own little family. Something I didn’t even know would be possible, I was just too scared to find out.

My little cousins would come over and I would witness Nelly always forming this incredible friendship with them, they seemed to enjoy spending time with Nelly and myself. They accepted the way I was, questions got asked but it was in a way therapeutic explaining to a child the story of my accident, comparing my injury to a deep, deep wound which would take years to heal and scar. It was always afterwards where I would cry as there was no vision of our own child.

I was jealous, bitter of everyone else’s life and loathed mine for a while. I couldn’t understand how myself and Nelly got dealt some pretty rubbish cards. I wanted the social media life of what many people portray. The happy snippets of their amazing holidays, their expensive clothes and bags, the cute children, the airbrushed look, the image of ‘how perfect my life is’ but in fact their photos couldn’t be further from the truth.

 

2018 came, myself and family welcomed my beautiful niece Phoebe into our family. The undying love I felt the first time I held her was something I never experienced before, looking down at this tiny human and thinking how perfect she was, was the start of my missing piece in the puzzle. This little thing won all our hearts, looking over at my mum holding Phoebe made me see the smile I once remembered and hadn’t seen for a long time and Nelly couldn’t be anymore besotted with her. Phoebe was my turning point, I would feel myself getting upset if I didn’t see her, something I never thought would happen and the only way to clear my wondering ‘what if’ thoughts was to find out from the specialist if having a baby was possible for us.

So, this is where our next chapter started, February 2018.

Nelly and I were extremely apprehensive about our first meeting with the obstetrician. It was another unknown and there were too many questions going on in my head. The meeting could not have gone any better, our questions were answered and it was all very positive, I seemed to be lucky as having my accident at 22 had allowed my bones/growth of my body to develop at the right stages of puberty, so importantly my body would allow me to carry a child. A massive weight seemed to have been lifted and when the times right and we were both ready then what will be, will be.

Fast forward to September, it was for me a crazy cocktail of emotions when we found out I was pregnant; surprised, shocked, ecstatic, elated, disbelief and petrifying. Nelly could not have been happier, but for me I was mostly petrified as there’s little research when it comes to a C4/C5 quadriplegic being pregnant. I wasn’t naive in thinking pregnancy was going to be easy but I wasn’t prepared for being pregnant!

As I just mentioned about there being little research with a SCI and pregnancy as soon as we informed the Doctor she then got us in touch with the Obstetrician again. We started having scans at 8 weeks, this was due to seeing how the baby was developing and for our own peace of mind. The 8-week scan was very mind-blowing to see this little blob growing inside me was hard to comprehend, we just couldn’t believe it, we felt incredibly lucky to be given this chance to bring a little human into this world. The plan by the Obstetrician was to be scanned every 2 weeks, so they could start measuring the foetus. Leading up to our 10 weeks’ scan, with just 4 days to go. I was going to the gym to stand, when being lifted I was leaving pools of blood behind me, worried and unsure I went to A&E. We firstly spoke to a paramedic over the phone after dialling 111 and they suggested the hospital. It was a Saturday and we found ourselves surrounded by people with sports injuries in a very busy waiting room. After having numerous bloods tests and being seen by the consultant, they couldn’t do anything until Tuesday as there was no one there to scan me to see if the foetus was still there. So, we went home with a probable miscarriage leaflet and we had 3 days to wait until we knew what was going on. Before having to deal with the potential of a miscarriage, I carried empathy for people who had gone through a miscarriage but I think it’s hard to completely understand the complexity of the grieving stage of never knowing that little person you are saying goodbye to until it’s happening to you, it’s something which must be emotionally and physically horrendous, soul destroying and hard to envisage. The feeling we felt for 3 days was very raw, I sobbed hot heavy tears into Nelly’s and my mum’s shoulders, the unknown was eating away at us. I couldn’t understand how unlucky we could be, surely not?

From that Saturday to our scan on the Tuesday the days couldn’t have seemed any longer. But when Tuesday finally came and seeing the foetus still being there couldn’t have been any more emotional, we were so thankful to see our little healthy blob.  It was amazing to be scanned every 2 weeks until my 20-week scan as we got the chance to see the stages of development from this tiny foetus to seeing the shape turning into a baby that was growing inside me. I was also being seen by a Doctor who specialised in the respiratory system. This was due to the fact of how well my breathing will be when the baby gets bigger, as it was all very unknown. With having a SCI at my level of injury I mostly use my diaphragm to breathe, so every 6 weeks I was having breathing and blood test done to see if my oxygen levels had decreased but luckily the levels stayed around the 34% mark which is what they expected with my injury.

We are now seeing the Obstetrician every month and we are still figuring out a plan for the birth, a little bit scary for me but the Obstetrician is very relaxed and calm about it all which is reassuring. We seem to have a great team behind us who have been contacting a specialist spinal team up the country for advice. We have been told that I could be induced to give birth in-between 36-38 weeks, with an epidural. This is all dependent on how the Obstetrician thinks the pregnancy is going as well as the growth of our baby. All of this is being monitored every month with a growth scan. It’s strange to think there could be a little us on this planet in under 8 weeks’ time, something I never thought I would be saying.

After writing the above, we had our monthly visit with the Obstetrician. We were discussing the plan and I brought up the shunt I have fitted. With mentioning the shunt, we seemed to have stumbled across a potential issue. I have a syrinx (cysts) across my spinal cord and I had a shunt put in 5 years ago that constantly drains the fluid away from my spinal cord and is then diverted below my abdomen so the fluid can be absorbed. The anaesthetist team who will oversee my epidural are a bit concerned as the last MRI scan I had 18 months ago had conflicting results, one being that the cyst had increased and is now covering the whole of my spinal cord. So, the other day I had an emergency MRI scan and I’m currently waiting for the results. My syrinx won’t harm the baby it will just change the birth plan, as if it’s covering the lower part of my spine I won’t be able to have an epidural. Plan B would be a caesarean, something the Obstetrician didn’t want to do as it’ll be a longer process for my body to heal as well as the trauma of a C section in relation to my suprapubic catheter area. It hasn’t been the greatest news as if my syrinx has increased the movement I have regained could be lost as well as other nasty complicated things so another operation will be on the cards, something I really don’t want to think about. Sometimes you just wish for things to be simpler, I just need to remember it could be a lot worse and only time will tell!

Physically, with the pregnancy side of things I have so far been lucky and I know there’s still time…

I’ve felt sick occasionally, the hot and cold clammy sweats that comes with a SCI have gotten a little worse, I’m dizzy everyday which is horrible but I can’t really complain, as the pain I’ve dealt with physically after breaking my neck, through my recovery and the surgeries I’ve had in the past have been 10 times worse than how I feel now. A big factor in my pregnancy is Autonomic Dysreflexia this can happen at any time throughout my pregnancy. They are especially concerned this happening during the birth that’s why they’re keen on giving me an epidural so I will not feel anything. They will be keeping a close eye on my heart rate just in case it does increase and I start having an AD attack, which is when my body starts reacting to things like pain. If it’s not treated quickly it can lead to a stroke, seizure or cardiac arrest. But an AD attack can happen to anyone with a high spinal cord injury.

To be honest, sometimes I have mentally struggled, it’s mostly got something to do with my wondering mind and thoughts. I’m constantly worried with what people think, their reaction, opinion etc. It’s the how is she having a baby? Why is she having a baby? I’m always battling with. Don’t get me wrong, my family and friends have been extremely happy for us, it’s the occasional comment I’ve heard from others. Words can unfortunately hurt and hearing things like my mum taking more of a motherly role looking after our baby couldn’t be further from the truth. Little do people know how capable I am, I am always holding Phoebe, I can bottle feed her and interact and love her. You don’t need working legs and hands to be a mum, I have so much love to give, every single family in this world is completely different. Yes, our little family is going to be extra diverse but that doesn’t mean I can’t look after my own child, Nelly is a massive support and very hands on when it comes down to anything regarding babies and children so I know we’ll be fine. Having a child for anyone isn’t easy, I know at times I will struggle but I find it very upsetting people are already judging my capability. I have a great support network but Nelly and I are prepared to do this on our own. And we can’t wait! I just wish everyone could be happy for us but I guess our world isn’t perfect.

I also have the occasional self-doubt of overthinking how I’m going to overcome barriers of bringing our child up, for example picking them up, bathing them, brushing their hair, I will just have to find a way to do these things my own way. My once dark days are starting to become less and they’ve been more like an hour of uncertainty. Instead of dwelling on my thoughts I can now just snap out of it and remind myself the greater story to all of this. I have so much to look forward to. I can see such a clearer picture of my life now, of course I’m still determined to keep improving, getting stronger and searching for a cure. But I’ve been blessed with this gift of bringing a child into this world, it’s something I feel I will never comprehend even when looking down at our baby. My body may look physically broken but incredibly we are one of the lucky ones and my broken body has allowed me to carry a baby. My priorities have changed, I want to live a happy, healthy life for our child. I want to show our child that it’s ok to be different, I will make sure we encourage them to follow their dreams, to believe in them self and ALWAYS give them unconditional love.

 

When I first had my accident, I wrote in my notes these words ‘Dear paralysis you ruined my life.’ It has taken many years for me not to believe those words anymore but I have found a purpose in my life, it might be completely different to what I had planned but that’s ok, I have so many things to look forward to, I cannot wait to share the rest of the chapters of my life with my husband and our child.

 

Embrace the journey.