I’ve been meaning to write this post for some time now – since before Elise was born, in fact. But, with all the fighting I had to do while pregnant, and the neglectful care I received in hospital after birth, I haven’t felt able to put pen to paper until now. To be honest, I’m not really sure who I’m writing this post for. Is it for medical professionals involved in the care of pregnant women? Is it that other chronically ill women who are or want to become pregnant? Or is it for myself, to help me process my experiences of maternity ‘care’? I honestly don’t know. Nevertheless, I’m going to write this post and hopefully, it will help someone, somewhere, to give or receive adequate maternity care. The topic in question, is birth plan vs birth preferences.
It seems to be given in maternity care, that a birth plan is quite flexible. And in many ways, I think this is important. Nobody’s ‘birth plan’ goes completely as intended. And as pregnant women, and medical professionals caring for them, there does needs to be an acknowledgement and acceptance that birth is a complex thing and never goes to plan.
Now you may have noticed that I put birth plan in inverted commas above. This is because in some instances, certain aspects of birth require a proper plan that is nonnegotiable. This is particularly so for those of us with chronic illnesses.
For myself, there were certain aspects of my conditions that needed to be planned for in terms of birth. Indeed, some of the things were planned for. It was agreed that I would not be able to have an epidural, because of my bleeding tendencies (associated with my hEDS). It was also agreed that I would not be able to have local anaesthetic and should I need a Caesarian section this would be done under general anaesthetic. These were things decided by the hospital to keep myself and my baby safe.
However, when it came to talking about lighting and how my photosensitivity and hemiplegic and basilar type migraine would be managed during labour, the hospital fell short. The other conversations we’d had about my conditions and how they would affect birth, were led by the hospital. When I raised concerns about my photosensitivity migraine, the hospital treated me as though I were registering preferences rather than trying to make a solid plan as to how my baby and I would be kept safe.
If you followed my pregnancy journey on Instagram, you will know that I didn’t have a safe birth plan in place until I was 35 weeks pregnant. The reason for this was that the hospital would not listen to me and were not willing to discuss my photosensitivity and its impact on my delivery. I put this down largely to the lack of understanding and awareness of photosensitivity and the severity and type of my migraine. However, is also due to be interchangeable nature of the use of birth plan vs birth preferences.
Whenever I raised concerns about my photosensitivity migraine, I was told that the lights could be dimmed. As far as the hospital were concerned, this was enough. This seems to view it as a preference rather than an important aspect of a plan that needed to be put in place. The issue here, is that fluorescent lights, however bright or dim they are, still flicker. While normal eyes and brains don’t pick this up, my brain does and it makes me very unwell. At the time of giving birth, I was able to managing a maximum of two hours under fluorescent lighting. After two hours under fluorescent lighting I was unable to speak to speak, has difficulty with coordination and often Lost the use of one side of my body. While sitting under the fluorescent lights, I would slowly lose my ability to concentrate, become disorientated and experience word finding difficulties.
I felt like I wasn’t being listened to. I know that this is partly because photosensitivity isn’t widely understood, and that basilar type migraine is rare. But being dismissed so quickly, without a conversation to determine my needs, made it feel very much like there was a blurring of the lines between a safe birth plan vs birth preferences.
Unfortunately, a number of things that we had discussed in clinic about safe delivery and recovery didn’t happen. I won’t go into specifics, that’s the subject of a complaint letter (which I’m working on at the moment). It felt like these important considerations didn’t matter to the hospital. The feeling that my safety didn’t matter, because ‘birth doesn’t go to plan’ grew stronger and stronger. Unsurprisingly, when medical professionals didn’t understand or try to understand that if they turn lights on around me in an emergency, they’d make the emergency worse. This was an important aspect of making a safe birth plan, but again the lines between a birth plan vs birth preferences were blurred.
We need more understanding of the difference between a safe birth plan vs birth preferences, for those with chronic illnesses and/or disability. My care was at a specialist hospital, who are supposed to be able to care for more complex needs, but they failed me on an epic scale. No-one should fear for their safety during the last weeks of their pregnancy because their needs are seen as a preference. No one should have to fight as hard as I did to be listened to in order for a safe birth plan to be created. And when specific things are decided, no medical professional should ignore these because they deem them to be a preference, rather than something important to the health and safety of the individual.
There is a difference between a safe birth plan vs birth preferences for those of us with chronic illnesses and this needs to be understood by the medical professionals who care for us. This also needs to be understood by individuals, so that (while we shouldn’t have to) we can advocate for the right care. 3 months later, I’m still picking up the pieces from the lack of care I received because the lines between a safe birth plan vs birth preferences were blurred.
Edit: I know that a ‘plan of care’ is the terminology used when there are medical needs that must be taken into consideration during birth. The consultant midwife I saw has acknowledged and apologised that specific things in my plan of care to keep Elise and me safe were treated as thought they were preferences, rather than medical necessity.
Find me on:
Bloglovin’ | Twitter | Instagram | Pinterest | Snapchat | Google+ | YouTube
You can also sign up for my newsletter and check out our Family Instagram!
