What to Expect When You’re Pregnant with Marfan Syndrome

Whether you knew you had Marfan Syndrome before you got pregnant or it’s something you’re just finding out, you may be wondering what you should expect during your pregnancy. Of course your experience will depend a lot on the severity of your condition and whether you have the associated heart complications, however here’s my experience as a relatively new mum with Marfan syndrome that I hope will help you feel a little more prepared!

Expect to be at the hospital (a lot!)

You need to prepare yourself for lots of trips to the hospital! You’ll have the standard scans as well as midwife and health visitor appointments, however when you have Marfan syndrome there are more people who will want to see you. You can expect to see your specialist and/or cardiologist every few weeks as they’ll want to keep up to date with how you’re feeling and monitor you for any changes. You can also expect a few extra faces in the room as often students will take the opportunity to see a Marfan syndrome patient in real life!

Expect a few extra tests

If you have an associated heart condition, you can expect to have a few extra tests. It could be an MRI scan or simply extra ECGs and echocardiograms to monitor any changes. Throw in your regular midwife appointments and exciting scans of your little one and it can start to feel like you’re never away from the hospital. However you do feel really looked after and extra opportunities to monitor and see 

Expect conversations around your labour

One of the issues that will be discussed quite early in my experience is your labour. I had read a lot of opinions online surrounding C-sections and how they’re often suggested for women with Marfan syndrome. However after discussions with my specialist it was decided I would have a natural labour. My advice would be to listen to the professionals and let them help you create a birthing plan you’re comfortable with.

Expect to have to explain what Marfan Syndrome is (many times)

In my experience many people in the medical profession still don’t fully understand Marfan syndrome or have simply never heard of it. I found myself throughout my pregnancy explaining my condition and associated enlarged aorta to people at many different levels. My advice would be to carry information with you about the condition. I sprained both my ankles whilst 20 weeks pregnant after falling off a curb. Every medical professional I encountered during this hospital trip hadn’t heard of Marfan syndrome so it can be really helpful to keep some information with you.

Expect conversations around genetic testing

One thing that is sure to be on your mind or discussed with you early on is the possibility of passing the Marfan syndrome gene on to your child. In my experience I had consultations with the genetics department at the hospital who discussed the likelihood of the gene being passed on and did a full family history. Following the birth of my son cord blood was taken for genetic testing. I was contacted 5-6 weeks after the birth and invited in to discuss next steps.

Expect follow-up care

When you’ve given birth to your little one you can expect extra follow up care. This might involve a longer stay in hospital for monitoring or follow up appointments with your specialist. Due to my enlarged aorta I had a five day stay in hospital after giving birth for monitoring. I was keen to get home with my son however the extra time was great for midwife support and advice during those early days.

Expect extra special care

Those that work within the NHS are incredible and I can’t rate them highly enough for the care I received during my pregnancy. You can start to feel like a bit of a special case and it can be frustrating to find the time for appointments every other week. However you do feel like you’re getting extra special care and you deserve it. Your little baby is coming in to the world and they need mum to be looked after just as well as they will be!