Talk given at the 55th Annual Meeting of the German Society of Angiology – Society for Vascular Medicine (DGA), Leipzig, 16 October 2026
How can you plan a pregnancy when you have a congenital vascular malformation? Which questions matter, and who can help? My personal look back shows what I knew at the time – and what I would raise earlier today.
Starting a family despite uncertainty
I wanted to start a family. At the same time, I knew that I had a congenital vascular malformation: Klippel-Trénaunay syndrome. In my case, the lymphatic vessels are also affected, and malformed vessels extend into the abdomen.
Back then, I had a thought that I can still understand well today: if I find out too much, I might not dare to go ahead.
I wanted to know what I was getting into. But I also didn’t want to organise my life solely around possible complications. My condition had been with me since birth. I knew my body, but I had not yet learned to ask medical questions as specifically as I try to today.
Perhaps other people affected know this dilemma: you live with your condition, arrange your everyday life and don’t want to be preoccupied with it all the time. When you want a child, however, some questions take on a new meaning.
My pregnancy and the birth
Overall, I experienced my pregnancy as fairly free of complications. Even so, the extent of the swelling in my legs surprised me. My left leg in particular worried me. I knew my legs – but I had never seen them like this.
At the time, I could not judge what role my vascular malformation played in this. Even today, I do not want to derive a diagnosis from it in hindsight. I would simply have liked to understand better what changes to expect in my case and what to look out for.
For the birth, I had a clear wish early on: a caesarean section. My gynaecologist discussed my situation with the hospital. This coordination gave me a sense of security. I trusted that the obstetric team would take my particular circumstances into account.
The birth of my son went well. My personal path, however, is not a recommendation on the mode of delivery for other women with a vascular malformation.
What I would ask earlier today
Today, I am less concerned with whether my wish at the time was the right one. Rather, I would want to understand more precisely on what basis the birth was planned.
Which vessels were affected? How precisely was their course known? Which findings did the team have? And was this information sufficient for planning?
Looking back, I cannot judge whether further examinations would have been necessary at the time. Perhaps everything essential was taken into account. That explanation, too, would have helped me.
For a conversation with the healthcare professionals treating me, I would now note down the following questions:
- What do we know about the type and extent of my vascular malformation?
- Are my existing findings sufficient for planning a pregnancy?
- What is the significance of previous thromboses, bleeding or procedures?
- Which professionals should be involved in my care?
- Who coordinates the assessment and discusses the next steps with me?
A first point of contact can be your gynaecologist. An angiologist or a vascular anomalies centre may also be a place to turn to. Today, I would raise my wish to have a child as early as possible, so that there is time for open questions.
When medical appointments take their toll
Coming to terms with your own condition is not always easy. After some medical appointments, I needed time to recover. I had often hoped for a solution or even a cure and went home disappointed.
Other people affected may have had humiliating or intrusive experiences. Someone who postpones an appointment is therefore not necessarily indifferent to their health.
The conversation can also be about what has been difficult so far. A sentence such as “Examinations take a lot out of me” can help the professional to better understand the situation.
Taking responsibility – with support
Today, I ask questions, collect my findings and raise any changes. After all, my vascular malformation doesn’t keep a calendar.
For this, I need explanations I can understand. I can only ask targeted questions if I know which information might be important. For me, taking responsibility for my health therefore also means asking for support and raising open questions.
My story is a personal experience. It cannot replace an individual medical assessment. But perhaps it can encourage others to bring up a wish to have a child – even if there is still uncertainty and their own questions are not yet fully formulated.