When I wanted to fall pregnant, I had so many concerns regarding my spinal condition called Syringomyelia. I searched high and low online to see if I could find stories online where women have given birth safely while having Syringomyelia, and I could not find much at all. No personal experiences, just case studies from doctors. It felt incredibly clinical.
This has brought me to wanting to write this blog post. I want this to be out there as a voice to speak to anyone who is looking online for answers that I had when I wanted to follow my dream of becoming a mother. I hope this can provide some guidance.
I was born with Syringomyelia, this wasn’t discovered while my mum was pregnant with me. My mum found a spot on my back and asked the midwives what it was, and they took it from there.
What is Syringomyelia?
Syringomyelia is a chronic progressive disease in which longitudinal cavities form in the cervical region of the spinal cord. A cyst or cavity forms within the spinal cord. This cyst, called a syrinx, can expand and elongate over time, destroying the spinal cord. The damage may result in loss of feeling, paralysis, weakness, and stiffness in the back, shoulders, and extremities.
I was monitored for changes, as I did not show any signs of impairment growing up. The major telling sign would have been going through my growth spurt as a child, if anything was going to happen it most likely would have been then.
I’ve been asymptomatic my entire life. I have lived my life just as anyone does, and I haven’t experienced any issues with my syrinxes thankfully. I have two syrinxes in my spine, they start from my thoratic region right down to my lumbar region.
I have been on a waiting list with a hospital in my state for two years to get an updated MRI scan to see where my spine is at. I wanted to have a proper MRI scan before falling pregnant because I didn’t want to tempt fate and potentially cause a whirlwind of issues with something that has caused me no issues to this date.
My desire to become a mother had overrun that decision. I fell pregnant regardless, because I wanted to and I believed that it was worth the risk and I didn’t want to spend my life waiting rather than just going for it. I was so worried throughout the beginning of my pregnancy that something would go wrong, that I wouldn’t be able to chase after my baby in the future from spinal pain or potential loss of the ability to walk. I didn’t know what was waiting for me at the doorstep.
The hospital we were starting our pregnancy journey with wanted me to follow up with our referral with the other hospital to see if they could push an MRI scan ahead. They couldn’t. So, we were left in the dark a bit. My hospital had never dealt with a pregnant Syringomyelia patient before, and they were quite interested in it at first but that died down.
The adjustments to my body with my pregnancy didn’t cause any concern for me. My hips widening, things stretching/pulling and of course the weight of carrying a big belly around were all going just fine. The cause for concern was with pain medication of childbirth.
With childbirth the hospital generally likes to encourage epidurals or spinal taps for women. Due to not having an updated scan, I didn’t want to run the risk of shoving a needle into an area that is essentially a massive fluid filled cyst along the entire length of my spine. This was an interesting discussion to have with the anesthetist. If worse came to worse, we opted for general anesthesia instead.
We wanted an unmedicated waterbirth, however my childbirth didn’t go down that route. I ended up with a cesarean section under general anesthesia.
General anesthesia was absolutely fine. My baby was perfectly healthy, but they did need to resuscitate her because she had a tiny bit of the anesthesia in her system. This is normal and expected. She is absolutely perfect and healthy. The doctors will discuss this with you prior to going to your surgery. I was fine, healthy and safe.
Epidural is a possibility for you if you wish to go ahead with the risk, they may tell you it won’t penetrate deep enough to cause any impact but they cannot guarantee this to you. Please make your decision carefully, epidural runs it’s own risks even without a spinal condition like Syringomyelia. Please don’t consider spinal tap if you have Syringomyelia, it will impact your spinal fluid which is dangerous with syrinxes.
In your research online with Syringomyelia and childbirth, you will find the occasional case study that was uploaded by doctors who found their cases fascinating because it isn’t common to go through childbirth with known cases of Syringomyelia.
Women have given birth vaginally, through cesarean and with medication or without for thousands of years and these women could have Syringomyelia without even knowing. The only true way you can be confirmed with having Syringomyelia is through an MRI scan and not many people experience MRI scans in the duration of their life.
I would have gone through childbirth vaginally given the opportunity, however I am glad that I got to experience it through a cesarean section under general anesthesia. I would never have given epidural or spinal tap a go, because I don’t believe it is wise to poke something that already has a serious condition, and for that I am glad general anesthesia exists because I can’t imagine the unbelievable pain of an unmedicated vaginal birth. I truly believe I would have been the biggest wuss about it.
My childbirth experience worked for me, even with my spinal condition that had scared the hell out of me with the unknown of what would happen. Women go through a lot of physical changes when creating and birthing a child, it is only natural to be scared if you are going through a health condition that you don’t know if it will have implications or not.
I have to say that I am glad that I took the opportunity by the balls. I am truly grateful that nothing serious came from it. I was terrified that I would lose the ability to walk, use my hands or have unbelievable spinal pain that would have to be handled with medication for the rest of my life.
Syringomyelia is chronic, I will have it for the rest of my life unless I have a spontaneous resolution where it magically goes away. I am yet to experience symptoms, thank goodness, so I’m going to take this in my stride and enjoy my time with my daughter.
If you are experiencing symptomatic difficulties with Syringomyelia, my heart reaches out to you. Please comment below, I would love to speak with you and be a shoulder for you.
There isn’t enough information out there about Syringomyelia, and it is incredibly frustrating. Some people, like me, have no symptoms until later in life when it catches up to them. If you don’t have symptoms and you’re just waiting for it to catch up, I feel for you! Don’t live in fear, do what you can now. Enjoy yourself, life is incredibly short.
This is my blog post for you out there if you were like me and just wanting to hear from someone who had done what I wanted to do. I wanted my baby and I made it happen, sometimes you have to take the risk. I have to say, writing this out and looking down at my baby girl asleep on my chest is magical. It’s worth it.
When I was searching high and wide to find information online, what little I did find even if it was just case studies – they were positive, and that is for symptomatic people. I hope this helps, I hope I have added to the positivity.
I hope you all have a wonderful day!