Chronic illness and healthcare during pregnancy

WhenTaniaTalks

I’m Tania. As I write this, I’m 37 weeks pregnant with a baby girl! I blog about beauty, fashion, lifestyle, chronic illness and disability over at When Tania Talks. I’m currently fundraising for a SmartDrive to allow me to get out of the house independently with my daughter when she’s here. Today, I will be sharing my experiences of accessing medical support as a chronically ill, disabled woman.

I always assumed getting the right maternity care would be easy. After all, there are two lives involved! Surely everything should be done to support a woman and her growing baby!? I certainly did everything possible before getting pregnant to make sure my care would be right - sought diagnoses, discussed plans with consultants and came off medication harmful in pregnancy.

Unfortunately, despite my best efforts, the medical support I’ve had during pregnancy has been hit and miss. I’ve had some great experiences and some really difficult, frustrating ones.

I thought I’d bullet point some of my experiences of the healthcare system as a disabled, chronically ill, pregnant woman. I’ll start with the rubbish ones, so we can finish on a positive note!

• I’ve had a medical professional push my wheelchair without permission.
• I’ve been made to feel guilty for needing to use my wheelchair full time, despite it being unsafe not to.
• I’ve had a medical professional assume I’d be having a caesarean purely because I’m a wheelchair user.
• Symphysis pubis dysfunction diagnosis was missed by an obstetrician, despite me raising concerns and being at a higher risk of developing it because of my hEDS. I had to push to get the support I needed.
• Having been told pre-pregnancy that “if anything, PoTS will improve,” I wasn’t prepared for it to go downhill so drastically. I’ve received no help managing symptoms that have left me unable to stand up safely, eat a normal portion and function before 11am.
• The nutritional support I’ve needed during pregnancy, still hasn’t been put in place, despite me chasing this up.
• Despite having a plan in place to stop it from happening, I’ve been left under problematic lighting in hospital for too long, making me unwell.

One of the biggest challenges with my maternity care has been being seen by a different doctor at each appointment. None of them have been my consultant! Seeing a different doctor each time (I’ve had lots of appointments!) is really hard when you have complex medical needs. Most doctors haven’t heard of my conditions and I’ve received conflicting advice.

Because of the lack of continuity in my care, it wasn’t until week 36 or pregnancy that we finally had a safe birth plan in place. This only happened because I asked to see the consultant midwife to discuss lighting during birth. Doctors didn’t understand the extent of my photosensitivity and unfortunately didn’t take the time to find out. I was being told “we’ll dim the lights, it’ll be fine.” But that’s just not how it works! Until we saw the consultant midwife, I was scared for baby’s and my safety during birth.

Despite the difficulties I’ve faced with my care, I’ve also had some excellent support on my pregnancy journey. My GP in particular has been amazing. She was so pleased for us, she gave me a hug when I told her I was pregnant! She’s really picked up the slack when other medical professionals have dropped the ball. As well as my really supportive GP, I’ve had the following positive experiences on my pregnancy journey.

• All my medical professionals fully supported our decision to have a baby.
• I had good support while coming off my medication - a process that took a year.
• My gyne arranged pre-pregnancy counselling appointments and made sure my care would be at a specialist hospital.
• The anaesthetist I’ve seen understood the need for continuity. She made sure I’ve seen her at each appointment.
• When I became ill at the hospital, the anaesthetist came to see me and made sure I was being looked after properly.
• We’ve had lots of additional scans. Because I’m complex, the hospital wanted to keep an eye on baby’s growth.
• All medical professionals have been understanding and supported the fact that I might have to go back onto medication, rather than breastfeed.

For any chronically ill or disabled person considering pregnancy, I’d suggest getting a great medical team around you and being prepared for every eventuality. Don’t be afraid to advocate for the care you need and have someone on hand to help with this wherever possible. We went into our journey very prepared, and yet we still faced lots of challenges. We’ve tackled them all head on and know it’ll all be worth it when our baby girl arrives!

What are your good and bad experiences of accessing maternity care?

mossycow

That's really interesting and in some ways very hopeful for pregnancy care. 

Ooooo! Very excited to hear news that you are so nearly close to a dream that has been hard fought to win. Wonderful.. 

I was less disabled when pregnant though I had concerns and afterwards gave feedback to the hospital regarding care for disabled /not average mothers etc.

My issues now are with back, neck and arms but 11 years ago when having Emily it was my arms only. I found it difficult communicaying that there were difficulties and needs I had BEFORE pregnancy and birth! 

I had lots of breast feeding support as it was hard to hold her etc and knowing before she was born made that much easier. 


Wishing you well in the next month, it's going to be amazing!

Sam_Alumni

Congratulations to @WhenTaniaTalks on the birth of her child Elise!

https://twitter.com/whentaniatalks/status/975353584811376640