Klippel-Trenaunay Syndrome

For those that may not know me personally – my firstborn was born with a rare disease called, Klippel-Trenaunay Syndrome. Getting the diagnosis wasn’t as straight forward as that though!

Going back – as a young couple excited at the thought of becoming parents and how our life was going to change in welcoming a little bundle was thrilling. Well, in my second trimester the usual pregnancy symptoms were in full force and it was at one of our ultrasound appointments that they have picked up on excess tissue on the chest area and referrals were to be made to see specialists. This is when the frustration of not having answers or being able to explain what was going on began and only ended on the birthing table.

From maternal fetal specialists to cardiologists to being put under an MRI while pregnant was very much stressful (something we all know is not good when pregnant) but was necessary to try and find out if our baby boy was ok.

Still no answers… the mention of spina bifida to heart problems to we have no answers were all we were being told. Going through this as a couple definitely made our relationship and bond that much stronger for sure. Regardless of all these emotions and questions, from the very beginning we were adamant that however or whatever it was – we will always love our little bean and never questioned this one bit – it was just the uncertainty of it all.

The following weeks went by with more doctor appointments and more uncertainty but sure enough we were getting closer to welcoming our little warrior to the world. Due to the high risk, we were not able to deliver at our local hospital, so I was instructed to go to the nearest Level II NICU which was a good 45 minutes from home. Many suggested a scheduled C-section but I wanted to do this as natural as possible…

Now this being my first born, I had no idea what a contraction was, or how labor went – well it all went so quickly. I remember waking up in the early hours of the morning and telling my husband that we had to go! NOW! Not long after, we welcomed our little boy to the world and this is when we got the “diagnosis” as they say.

With specialists from all different medical fields in the room while I pushed my firstborn out, it was then and there that they were in agreeance – Klippel-Trenaunay Syndrome (referred to as KTS from hereon).

So what is KTS?  KTS is a congenital vascular disorder. It affects every person differently but includes port wine stains (involving blood vessels), an overgrown of a limb, soft tissue and/or bones and vein malformations. If you would be interested in learning more you can here.

Because of the diagnosis, our little peanut was placed in the NICU for precautionary measures but the first couple of days was REALLY a whirlwind. Not only were we shell shocked into the start of parenthood – sleepless nights, learning how to change a teeny tiny baby’s diaper and being the sole source of food (well for me it was) but here we are trying to grasp and learn all about KTS.

Recollecting all these memories makes me smile inside knowing that we were fortunate to be blessed with a very “SPECIAL” boy. Yes there are times, that we worry about the future and how his condition is progressing, how it will affect his day to day life and how we are going to help him grow and embrace his condition. We have days that seem harder when it comes to KTS and there are days that we (try) forget all about it and enjoy each day to the most!

I will be sharing some more experiences and learning curves of our days embracing in KTS but for now I will go and snuggle my warrior baby (in full force toddlerhood).

Love Clarissa