Advice: Getting the Best from Maternity Services

This is something I wrote for InterAction's excellent recent article on pregnancy and ME. They couldn't publish it in full so just quoted excerpts from it. But here's the original, in case it's useful to anyone.

NHS Maternity Services include the care you receive while you are pregnant, through to the birth itself and your first few days or weeks with your new baby. Like in other areas of healthcare, recognition and understanding of ME within Maternity Services is patchy. So it helps to know how the system works to ensure your needs as an ME sufferer are met.

My initial appointment (or “booking appointment”) with a midwife at 13 weeks came as a shock. Becoming pregnant with such a debilitating and often severe illness as ME felt like the biggest adventure my body could undertake. I was full of burning questions and anxieties about how I would cope. But ME/CFS is not considered a risk factor for complications in pregnancy or labour and many midwives I came across hadn’t even heard of it. All the concerns I raised regarding my disabilities were dismissed with the same advice given to all nervous first-time mums: “Don’t worry dear, it’ll be fine”.

If you have concerns ask your midwife or GP for referral to an Obstetrician

But worry I did, and added bureaucratic complications with my antenatal care left me feeling totally unsupported. Finally I complained to a head midwife that my disability hadn’t been properly addressed. It was only then that I discovered I could freely refer myself to see an obstetrician. From then on my level of care and support improved dramatically. The doctors proved to be far more knowledgeable and sensitive towards ME than the midwives and discussed all my options for the birth in detail, from pain relief to elective caesarean. And their medical authority proved invaluable in advocating for my special needs later on during and after the birth.


Discuss ME in the context of your Birth Plan.
Make sure you discuss the risk of relapse following labour and strategies to manage your energy during it. Pain relief plays a very important role in conserving energy during labour. In my case an epidural was the only way to halt the severe relapse brought on by contractions that left me paralysed within an hour starting labour. However, everyone reacts differently and many women with ME manage a vaginal birth with minimal medical intervention without much impact on their illness. So my experience of labour can’t a basis for advice. However, I would say that there is a lot of pressure on women nowadays to aim for a natural, drug-free labour. Yet there is no glory in resisting pain-relieving drugs if they save you the strength to push your baby out at the end of a long, exhausting labour or if they help to minimise a relapse afterwards. After all, you will want all your energy to look after your new baby. If you want to aim for an active birth, consider birthing positions which are upright but supported to avoid unnecessary muscular effort. If your ME is severe an elective caesarean might be your best option.

Make sure all your requirements are stated in your Booking Notes.

This is really important. During and after the birth you probably won’t see your team of antenatal doctors or midwives. You will encounter a new team who may not have heard of ME and you probably won’t have the energy to be very assertive about your needs. So the consideration given to your ME will depend on the statements and recommendations made in your Booking Notes beforehand, (the notes you carry with you throughout pregnancy and labour), ideally by a doctor. They will include your birth plan. Mine also stated that I shouldn’t be sent home if I arrived at the hospital with labour insufficiently established; I should be allowed to eat during labour to keep up my strength, and be given my own room after the delivery if available to have more chance of sleeping than on the maternity ward.

Discuss your post-natal needs too.

It may seem impossible beforehand to envisage what life will be like with your new baby. But it’s worth discussing what your needs might be with your doctor or midwife before the birth to ensure you get the best support while you are in hospital and the best possible start as a new mum. Once again your booking notes may be vital in vouching for your genuine medical need. You may have to stay in longer than normal women (I was kept in hospital for 6 days while the paralysis and weakness wore off). Don’t be put under pressure to go home early to free up bed space. My time in hospital proved invaluable for catching up on some sleep and getting breastfeeding established. These are the strategies that helped me:
I had to give Sofia to the midwives at night time so they could give her a feed and allow me an unbroken 5 hour stretch of sleep. I hadn’t planned it and felt really guilty but this was the only way I could start to recuperate from the labour.
I asked them to cup feed her rather than bottle feed at night as this method doesn’t compromise the baby’s learning process with breastfeeding.
They showed my husband how to cup feed so he could do the night-feed once we got home.
I had lots of help with learning to breastfeed because I was too weak to sit up, lift Sofia or hold her in position. I could never have managed it without a midwife holding Sofia in place for me at every feed at first.
I needed a bed wash initially as I was unable to stand or walk to the bathroom for 3-4 days. This was certainly not considered a normal procedure on a maternity ward and I had to fight for it!