Linnea has chronic thromboembolic pulmonary hypertension (CTEPH) and had her daughter two years after having a pulmonary endarterectomy.
“Before surgery, I had given up the thought of ever getting pregnant and having my own family. I was thinking of getting sterilised after the operation, but when I was being discharged, my mother helped me have a conversation with my surgeon and he said he did not think pregnancy would be a problem since the pressures had been lowered and normalised. He also told me that he had experienced pregnancy with women with a more severe status of their CTEPH who had gone through successful pregnancies. This gave me a lot of hope.
But when I travelled back to Sweden (I had my operation in Denmark) my doctors had a hard time discussing the subject. Eventually, I was told that they would help me during pregnancy but they did not recommend it due to the risks.
I took some time to recover from the operation and when I discussed it again, my doctor wanted to do another right heart catheter. This showed the pressures were higher than expected (almost the same levels as pre-op). I was strongly advised not to get pregnant because the pressures might get so high by the last weeks of the pregnancy that I would not survive. I was a wreck.
After nine months on different medication the catheter was repeated and this time it showed normal pressures. And a while later I was told by a cardiologist that the only thing stopping me from becoming pregnant should be my medication, which could be changed or paused.
By this point I had already begun thinking about pregnancy again, and some weeks later me and my partner were babysitting his three-month-old nephew. Taking care of him for a couple of hours and watching my partner with him made me realise that we could do this together. The following day we decided to try to have a baby. One month later, I learned that I was pregnant.
At first, my Warfarin was replaced with injections and my high blood pressure meds were paused. I met with my PH team once every two months or so and they came up with a plan for the birth and for how to treat me if I started to feel worse during pregnancy.
I felt very tired and stressed at the start and took sick leave from my job but over the following months I felt fine.
My daughter was born on Christmas Day with no complications. We went home two days later and have both been healthy since.
The only problems I had were with breastfeeding. I finally decided to give it up when I realised I had just gone through a high risk pregnancy and survived. That was enough.
My advice to others thinking about starting a family is to talk to your doctors regularly and take someone with you to appointments who can help ask important questions.
Talk about the tough topics. We discussed the worst case scenario very much at home both before we decided to get pregnant and during the pregnancy. Was my partner prepared to face the risk of losing both me and our baby – or ready to be a single parent?”