Julie's Story

A porter arrived and opened my door, getting me onto a wheelchair as I still couldn’t feel my legs. I looked up and saw the ceiling lights whizzing past me one by one. That is the last thing I remember until I woke up in the Cardiothoracic Intensive Care Unit at St Georges Hospital several days later.

On arriving at the hospital, I had been taken to the maternity ward and treated as a ‘woman in labour’. I was monitored overnight but no one seemed to know what was wrong. A chest Xray was ordered, and I was given pain relief. The following morning, one of the nurses struggled to get a blood sample from me, and the Senior Midwife arrived on shift. I credit her with saving my life.  She now says that she took one look at me and knew my problem was not baby related. She humbly puts her efforts down to a fresh pair of eyes arriving on shift. An alarm was sounded, and staff rushed to the unit to assist.

Initially, I was treated as septic. I was put to sleep and taken for an emergency c-section as the Doctors were worried that I was infecting my baby, or vice versa. When my condition deteriorated after the c-section, a chest scan was ordered. It was then, that the issue was highlighted. I had suffered a type A aortic dissection. I was prepared for theatre and underwent 9 hours of open-heart surgery to replace my aortic valve and aortic root.  My family sat in the family room waiting for updates. They were told I was the sickest person in the hospital with one Doctor suggested they say their goodbyes, as there was not much hope. Thankfully, I had other ideas!

I spent three weeks in hospital and during that time I was visited by a member of the Cardiology Team. He discussed my progress and mentioned something that would feature in the rest of my life, Marfan Syndrome.  No one in my family had ever heard of it, let alone been diagnosed. We had no one tall in our family and the only clue was that my brother had scoliosis when he was a teenager.

As time went on, the rest of my family were tested. We discovered that my dad, my brother, my new baby, and my brother’s two children, all carried the gene. I thought my own diagnosis was hard to take but hearing that I had passed the gene on to my baby, knocked me sideways. I felt so guilty every time I looked at her and I worried constantly about things she was doing, and things she may never get to do. Over time I became to realise that there is a huge benefit to her being diagnosed early on. She is already taking Losartan and this will help her immensely. Medicine moves at such a fast pace and the Marfan Trust do such great research work – who knows what they will discover in years to come!

My life with Marfan Syndrome is certainly different but just as fulfilled. I just take things a little easier.  I am more aware of staying healthy and keeping calm when I feel something isn’t quite right. What I find helpful is being able to check certain things at home as if I feel a little unwell, I can usually put my own mind at rest. As someone who will be on Warfarin for life, I check my own INR at home. I can also check my blood pressure, heart rate, oxygen level, blood sugar and I have a 6 lead ECG device/app.