As a woman diagnosed with pulmonary hypertension, it can be devastating to be told you shouldn’t go through pregnancy – and it’s something many find difficult to discuss. In a bid to help others, PHA UK member Bisma Hussain – a counsellor who has lived with PH for five years – explains how she has come to accept her circumstances.

“There is a massive difference between making a choice to not have children, and that choice being taken away from you.

I was newly married when I was told I had PH. I remember the consultant sitting my husband and I down and explaining there was a one in four chance of me not surviving if I gave birth. It was a really scary figure, and although it was hard to digest, I knew I couldn’t do it.

Lots of things went through my head – should I have tried for a baby sooner? Should I have done this, or that, and would that have changed anything? I went through all these different scenarios in my head, but I had to bring myself back to reality and decide on how to move forward.

It took a long time, probably around two years, to decide on our next steps.

We went down the adoption route first but got rejected because of my condition. It was frustrating because my husband’s perfectly fit and healthy, and there are so many people who give birth naturally and then get ill, and they are still able to have children.

I strongly believe I would have given someone a really lovely home if they had given me the opportunity, but I had to accept that just wasn’t on the cards for me.

We then went down the surrogate route, so we were going to freeze my eggs, and then find a surrogate. But that’s not an option for everybody, and it was very, very expensive.

We were on the surrogate list for years and it got to a point where my husband and I both had to decide whether we continued. I was conscious of not getting any younger, I was in and out of hospital, and it just didn’t feel viable for me anymore.

I think what eased my mental health regarding the issue of having children was that I had the support of my husband with the decision. If he had been insistent on wanting children, it would have been a lot harder. Coming to a mutual decision took that weight off my shoulders.

Like a lot of women, I was raised in a household where it’s expected that you get married and start a family. It’s embedded in women from a young age that it’s just how your body is supposed to be.

So, when somebody tells you that your body isn’t going to let you do that, there’s a lot of self-blame. However, I’m also a big believer that everything happens for a reason and maybe it just wasn’t the thing for me – and I’m okay with that now.

Yes, it took time. You have to be kind to yourself, and you have to go through these emotions because it is a form of grief. You are giving up something – a child that you will never be able to have – and you have to mourn that. But once you come out the other end, it does feel lighter.”