Pregnancy and Klippel-Trenaunay Syndrome

Yup that's me! This picture was taken 6 days before giving birth to my baby girl. I was HUGE! Now I mentioned in a previous blogpost How to Smile Your Way Through Labor! how scared I was about giving birth, and pregnancy over all. And eventhough it's a pretty scary thing to go through for any mommy-to-be, I had something extra to worry about: My diagnoses of Klippel Trenaunay Syndrome.

One and a half year ago, I didn't know if I would be able to have children. At the age of 21 I was diagnosed with Klippel Trenaunay Syndrome. KTS is a congenital vascular disorder. According to my doctors there are only a few cases of pregnant woman with KTS described in medical literature. This pretty much meant they weren't able to tell me what I was going to expect. KTS was once thought to be a contraindication to pregnancy. Luckily we know better now. Succesful pregnancies can be achieved.

A little over 1,5 year ago I made my first appointment to discuss my wish to be  mom. I was still on birth control, but because I was at high risk for thromboembolism I was told to quit the birth control I was on. A DIU was the safest choice for me, but since I was interested in becoming a mom it didn't make any sense to get one. So I figured this was the time to stop birth control and see where it would lead me.


Because the uterus can be affected by the KTS, we started off with an internal exam. All went smoothly but after the exam they did inform me about the possible risks of pregnancy with KTS. For me, the risk factors were mainly a higher risk of thromboembolism, excessive bleeding, increased operative delivery, higher risk of complications, coagulation disturbances and an increase of the KTS symptomes I already had. For the baby placental insufficiency could be the biggest problem, causing fetal growth restriction or worse.

A couple of weeks later I was schedueled for a MRI to see if my KTS caused any disturbances around my uterus. After reading the pamflet (which advises against getting a MRI during the first trimester of pregnancy) I decided to do a pregnancy test, just in case. I knew I wasn't pregnant because I just got off birth control and I didn't even have my period yet. But oh boy, I was already knocked up!

So besides getting over the initial shock of getting pregnant that easily, it also meant 9 month of intensive medical monitoring. Since there are no university hospitals in my area, this also meant alot of travelling. It was so incredibly tiring. I was working two jobs and having to take all this extra time to get to my hospital appointments.

Because there was a high risk of  thromboembolism, I was put on bloodthinners early on during my pregnany. The horror! You would you would get used to getting daily injections, but I didn't! Everyday my anxiety towards those awful injections grew. But if this meant staying healthy during my pregnancy, I had to endure it.

As the months went by I passed every single check up with flying colors. I think to everyone's suprise! I was pretty much symptom free during the entire pregnancy and I even continued working until 2 weeks before giving birth to Charlotte. I actually went in expecting the worst. I did my best not to bound with the little baby inside of me because I was afraid I would end up losing it. I was keeping so preoccupied with all the other things that were going on so that I wouldn't worry so much about all the complications that could accur. But they never did! I was blessed with the easiest, complication free pregnancy! And i even got two wonderful 4d echo pictures from charlotte's 12 and 20 week medical scan. All paid for by my insurance! :)

There were only two minor problems I encountered after giving birth to Charlotte. Pregnancy had taken a toll on my right leg and the pain symptoms I already had increased. This actually led to laser threatment to remove a vericose vain in my leg to relieve pressure. But that went very smoothly. And of course Charlotte was a bit smaller than average, causing her to not be able to regulate her blood sugar level right a way. This meant she was hooked up to an IV and had to stay in the hospital a few days extra. But compared to what could have happened, it was still a walk in the park for us.

Pregnancy is never without risk, but if you have a medical condition that can cause even more complications, it can cause quite some anxiety. There isn't a day that goes by that I don't realise how thankful I should be for having such a positive experience. I am the best possible scenerio and I have a gorgeous healthy little girl to proof it. I'm very Lucky! I wanted to share this story because this is the story I needed to read when I was pregnant. Getting diagnosed with KTS or any other diagnoses for that matter doesn't automatically have to mean you have to give up on your dreams. You can be the success story!

Kisses!