Clare's Story - POTS Pregnancy and Baby
When you suffer from POTS or any other fainting disorder, the decision to try for a baby is not straight forward. I faint at least a few times a week, I am too ill to work, I had to give up my driving licence because of my fainting and I use a wheelchair outside the home because I can only walk a few yards. My husband, Simon, and I had a lot of questions and worries about how on earth I would be able to cope with looking after a baby when I can only just look after myself. We waited a few years in the hope that my health would improve but it didn't. Eventually I became so depressed at the prospect of a life without children that Simon and I decided to start trying anyway.
The first challenge was to come off medication that might be harmful to an unborn child. It took me three months to be weaned off all the medication for my various health problems. Coming off the beta-blocker I took for my POTS meant that I went back to feeling lightheaded every time I stood up and fainting even more frequently than usual. It took some time before I got pregnant, so for a while it seemed like I was putting up with the extra symptoms for nothing but eventually, with the aid of the fertility drug Clomid, I got pregnant.
Coping strategies
Because I tend to faint with little or no warning the most difficult and, indeed, expensive thing about pregnancy was trying to minimise the number of times I fainted to reduce the risk of injuring my baby. Stairs are one of my worst triggers, even though I crawl rather than walk up them. Before I got pregnant we had part of our garage converted into a downstairs toilet and shower room so that throughout pregnancy I could come downstairs in the morning and not go back upstairs again until I went to bed at night. I also had to stop doing housework and start paying a cleaner. In fact, I stopped doing anything that required any more effort than sitting still. If I had been able to do more before I got pregnant, I would have found pregnancy very boring and lonely by comparison but I was already used to solitary daytimes and actually quite enjoyed spending time just talking to my ‘ bump’.
My inactivity paid off because, although I still had tachycardia and my blood pressure was low throughout pregnancy, I fainted far less frequently than I normally do. Of course, if Simon and I decide to have another baby, pregnancy will be more risky because, with a toddler to look after, I won’t be able to spend my time sitting around doing nothing. However, we’ll cross that bridge when we come to it.
The other difficult thing about pregnancy was coping with other people’s attitudes to me becoming a mother. A lot of people said things like, “You can’t look after a baby. What will happen to it when you faint?” Even worse was the attitude of Social Services who thought that my fainting would pose such a danger to my baby that they threatened to put her on the ‘at risk’ register unless I agreed to make sure that I had someone else with me 24 hours a day once she was born. Having people question my ability to care for my baby reinforced my own fears about how I would cope. However, before I even got pregnant, I had thought a lot about what I could do to keep our baby safe and I knew really that she should be pretty safe as long as I did everything with her at floor level and had someone else do the things that I couldn’t safely do for her. Simon and I had to budget for me to have some help for a few hours a day and, since Social Services weren’t prepared to contribute towards that, they had to accept that for most of the day I would look after our baby alone.
The birth
Bridget was born by caesarean on 19 July 2006, weighing 5lb 8oz. Whilst having POTS doesn’t necessarily mean that a caesarean is needed, I faint so easily that it seemed unlikely that I would be able to give birth without fainting at every push. As it turned out, Bridget was breech so that made the decision to go for a caesarean even easier. Apart from being admitted to hospital the evening before the delivery so that I could have a couple of bags of intravenous saline overnight to prevent my blood pressure dropping with the spinal anaesthesia, I didn’t need any other special precautions for a caesarean delivery and recovered quickly.
Being a Mum
Parenting with POTS has raised quite a few practical issues, some of which Simon and I had been able to plan for before Bridget was born and others we have to resolve as we go along. Doing everything with Bridget at floor-level and avoiding ever carrying her while I’m standing has been easier said than done. Careful choices of baby equipment have helped. For example, we chose a cot with a side that can be dropped right down and under the cot so that I can sit or kneel on the floor to lift Bridget into and out of it and, instead of a standard high chair, we bought one that can be used as a ‘low chair’ so that I can put Bridget into it without standing and then sit or kneel on the floor to feed her. Once she reached three months Bridget was old enough for me to start using a buggy to move her around downstairs but, until that point, I had to walk on my knees. I still spend a lot of my time on my knees when I’m with Bridget to minimise the chances of my fainting and falling on her, so much so that if I had to recommend one thing for parents who have to do everything on the floor because of fainting, it would be DIY-type knee pads!
It has been harder to deal with the emotional side of being a parent with POTS. Make speech break it up a bit Parenthood for me is very much a compromise between what I would like to be able to do and what I actually can do. There are some things that I simply can’t do for Bridget that healthy parents take for granted and it has been very hard to come to terms with that. Whilst I can help with bathing Bridget, I can never risk bathing her alone, nor can I carry her upstairs, which means that she has a much later bedtime routine than other children because we have to wait for Simon to get home from work and carry her upstairs. When Bridget was tiny, she was in a lot of pain due to severe gastro-oesophageal reflux and I felt powerless to help her because I couldn’t walk her up and down or take her for a drive to soothe her. I can’t take Bridget out for walks in her pushchair and we are rather isolated because we can’t get to baby and toddler groups. Instead, Bridget goes to nursery once a week to enable her to interact with other children.
However, there are a lot of things that I can do for Bridget. Because, I can’t work, she has my undivided attention all day. I was able to breastfeed her until she was 13 months old, which seemed to have the added benefit of limiting the severity of my POTS symptoms throughout that period. Although I can’t risk using the cooker, I use the microwave to provide Bridget with healthy home-cooked meals. I play with her, read and sing to her and even take her to a parent and baby swimming class, albeit with paid help to get there and to dress her afterwards. Although I am disabled, I am still Bridget’s primary caregiver. I look after her on my own for 10 hours a day. I entertain, educate and comfort her and, although chasing after a toddler all day doesn’t help my POTS symptoms one bit, being Bridget’s mum brings me so much joy every day that it is definitely well worth it.