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About 15 weeks ago I found out I was pregnant. A big shock as our contraception must have failed, but a very welcome and wanted shock all the same. My partner and I have been wanting to extend our family for a while. As we are already bringing up my stepson together, another baby is an exciting prospect. I was a bit concerned at first about how I, as a disabled woman, would manage…Ok let me reframe that. I, a woman who happens to have a disability, had the same concerns every other woman has whilst pregnant. What parent doesn’t worry about dropping their beloved bundle of joy, or how they’ll cope with very little sleep.
After a few tears (hormones…also very normal!), I’ve realised wheelchair use doesn’t make much difference in the concerns I (or others for that matter) should have about how I will care for baby. Yes, its likely to require some work arounds. Slings instead of a pushchair, an adapted cot, and maybe a swivel car seat. Thankfully, we have a great support network around us. I think thats more important that what kit you buy, disabled or not! That said, as with most parents, money was a concern. Being resourceful helps! I’m 22 weeks pregnant now and have already sorted 75% of what we need, with relatively little money spent. EBay, shpock, freecycle and local mum’s Facebook groups I thank you! So, generally positive, and exciting, and hopefully makes a little more sense to the lack of posts recently!
But it hasn’t been all positive. I knew that some people would have something to say about my pregnancy. Everyone bloody well has an opinion! But nothing prepared me with the totally dualist approach I’ve encountered – particularly within the medical community.
The Medical Response to My Pregnancy
I first went to my GP, who was all smiles, very supportive and has been ever since. The community midwife on the whole has also been very supportive in her attitude. Although her role has stifled how much she’s been able to help. Even the hospital consultants have been more supportive of how I want to give birth than I thought. On the other hand, some of the hospital midwives (not all I might add), and one of my consultants, have been difficult at best and downright insulting at worst. I’ve been spoken to like a child. Reduced to tears. I’ve even been asked if I had “considered my options”. Asking me if i’ve considered having an abortion, purely on the basis of me being a full time wheelchair user. Totally unacceptable!
There’s no getting away from it. The stigma towards disabled parents is massive. I’ve already experienced discrimination within the school admissions system and the needs of disabled parents being frequently disregarded. The lack of accessible baby changing areas (why are they all so high!). Social services not understanding their obligations towards disabled parents, as stated in the care act. I think many people still find it hard to understand that disabled people can and do have sex and relationships. Let alone have kids and live fairly normal lives by most standards. But the only way to remove this stigma is education, and visibility.
Research, Research, Research
I’ve had the majority of my care at the hospital has now moved up to more senior midwives who have worked with a number of disabled parents in the past. Its made a big difference! But I’ve also had to do my research. For my main condition – hypermobile Ehlers Danlos Syndrome, there’s no NHS maternity care guidelines. My care has been very different to another woman with hEDS I’ve met who’s due 6 weeks before me and planning to give birth at the same hospital. Whats standard practice may not be right for you or your baby. The first midwife I saw at the hospital immediately assumed I would be having a caesarian section. I was shocked. She based her assumption purely on my wheelchair use. Disabled or not, this really wouldn’t be my ideal. Also, I saw no medical reason for doing so. My consultant obstetrician confirmed that for someone with my condition, a C section really should be only to be used in an emergency.
Learn About Your Options
What I have learnt so far is how important it is to learn everything you can about pregnancy in general, pregnancy and your conditions and your rights. Yes, even when giving birth, you can say no to any interventions you don’t want! The positive birth book has been a total eye-opener for me. I would recommend this to every pregnant woman! It doesn’t advocate one way of giving birth over any other, but it does tell you what’s available and what your rights are. There is no right way to give birth, just a right way for you! It’s also worth shopping around for the right place to give birth.
If you’re seen as high risk, it may seen like some options may be closed to you. For example, most midwife led units only accept low risk pregnancies, and you maybe told that a home birth is out of the question. That is with NHS support, but there are independent midwives who may be willing to support your choice. I’ve been considering having a doula at my birth to support my birth choices. The which birth tool can give you advice about what’s available in your area, in terms of hospitals and free standing services. If there is clinical need to do so, you can also ask to be seen at a hospital further away (i.e. they have specialist rheumatologist that work in the obstetrics unit).
Antenatal Classes and Support Networks
I’ve been told that NCT and maybe even the hospital antenatal classes may not be that useful, because of the way I’ll have to modify things to suit my disability. I think it’s worth going along anyway, as a few nuggets of information may be better than none. There’s also a big social aspect to these, and considering how closely linked social isolation is to post natal depression, I’m willing to sit through a few hours of irrelevant information in order to gain some new friends! Facebook groups like Mums like us (a group for disabled mums) and more general groups like Punky Moms UK (a group for mums of the alternative persuasion, but also a judgment free zone, which we always need at times) can be a lifeline.
Some areas also have mums-to-be groups, unfortunately all have recently closed in my area, but talking to your midwife, Home start and your local children’s centre to find out what’s available in your area. If you happen to be in the West Midlands area, I’m hoping to start up a disabled parents group within the next month. If you’re interested, send me a message! Sling libraries/groups, La Leche League support networks (if you’re planning on breastfeeding) as well as checking on local notice boards might also be worth a shot.
I’ll be keeping you guys up to date with equipment, information and anything else we’ve found which has been helpful, as well as lovely baby pictures once she comes along!