What in the world in Hypoplastic Left Heart Syndrome???

You've never heard of HLHS?! Don't worry a week ago Monday neither had we... To be honest the thought of a Congenital Heart Defect (CHD) had never crossed our minds either, as it isn't well known. What we have learned just over this past week & a half is amazing and been so informative and opened our eyes to a whole new world that needs more awareness. So lets break some of it down to help it make a little bit of sense!

There are many different types of HLHS but for now as I shared in my last blog we don't know the extent of hers so we will just leave it at HLHS!

Hypoplastic Left Heart Syndrome (HLHS) is a Congenital Heart Defect (CHD.) So down the road if you hear us share those abbreviations you'll have an understanding as to what we are talking about.

1 in every 100 babies will be born with a CHD- Breaking that down further every 1 and 4300 babies will be diagnosed with HLHS with only 1/3 of those being found in girls. When I first read that last Monday I balled, those odds and our little girl is that 1. But I remind my self that god blessed our little girl with being that 1 for whatever his reason may be, we are just going to have to trust in that.
 

 

Right now there is no cure for HLHS only treatments. Here are the 3 main surgeries that come along with HLHS. She will need her Norwood surgery done within the first few days of her life, until she has that surgery they will have her on a medication that will keep her ducts  from closing (which happens naturally on all babies after birth) until her surgery is done. She would then have her Glenn done at 3-6 months old. Followed by her Fontan between 2-3 years of age.

There are so many different types of CHD out there and we are just learning a little bit at a time on this one. But with learning we are trusting in god to help give her and us the strength to get through this, the surgeons, doctors, and nurses we will be working with to have the courage and knowledge to help make our baby better!




 So here is just an idea and gives you a look at some facts of HLHS and what she will be having done! Again we don't know her extent so we have no game plan right now, this is just general information on HLHS because as I stated before its not a very known condition. With that, one goal we will have along with helping our daughter fight this is bringing more awareness so those that will walk in the same shoes down the road may have more resources, help and information to get them through this difficult time.

If you're reading this down the road just learning the same things we are now, know you are not alone, and there are many that have been where you are right now! Reach out as we are all here for one another. We have meet some amazing people this past week that have given us hope and helped us start to work through some of these whirlwind of emotions we now have and we would love to help you do the same!