Pregnancy & PH: An introduction
One of the many things women are advised when they are diagnosed with pulmonary hypertension is that they should not become pregnant.
For many people at the time of diagnosis, they feel so unwell that thoughts of the future and such things as a family are not worth worrying about; getting to a point where they feel better and learning how to live with a life-limiting condition is more than enough to concentrate on.
Sometime after diagnosis, and after responding to treatment, people can often find themselves feeling much better and are able to think about their future again. When thinking about the future, it is normal to think about having a family. But how do you have a conversation with your medical team about something which they’ve told you very clearly is a no-go area?
At the PHA UK we know, from listening to our members, that conversations about having a family are sometimes difficult to initiate with healthcare teams. But we also know, from listening to the medical professionals, that they really want couples to talk with them as early as possible when they are deciding about ways to start a family.
We have produced these web pages to cover the facts about starting a family with PH and the options available, and to address some of the questions couples with PH have about pregnancy.
We are also sharing the stories of those who have first-hand experiences of different aspects of pregnancy and starting a family (names have been changed). We would like to thank those who have shared their stories with such honesty.
Most of all, we want you to have enough information to make a decision that is right for you, your partner and your situation and to feel confident enough to start those conversations with your healthcare team as early as possible.
Pulmonary hypertension can impact lots of areas of people’s lives and raising a family is one of them. Pregnancy remains a very high-risk option but clinical teams do have experience of dealing with this. Adoption and fostering can be a really fulfilling way of changing not only your life but also someone else’s by offering a family life to a child that has lost their own family relationships. Agencies may remain wary of people with long term health conditions, but if you are prepared to stand your ground and provide them with the information they need, there is no reason why this should not be an option to you if your health is stable. And surrogacy is an increasing option for those who can afford it.
At the end of the day, this is your life and you have to make the decision that feels right for you and your loved ones. But please, do speak to your specialist PH team at the earliest opportunity about anything that may affect your health.