Hi guys! This post is going to be very personal. And maybe a little heartbreaking. Grab a cup of coffee and read…
Tomorrow is February 1. February is Congenital Heart Defect Awareness Month. I guess it goes along with it being Valentine’s Day in February as well (hearts and all). Now honestly, Congenital Heart Defect Awareness Month was never anything that I paid a whole lot of attention to. Until it happened to us. 1 in 110 kids are born with some sort of congenital heart defect. My Grandson is one of them. Kaison was born with Hypoplastic Left Heart Syndrome. The simple explanation is that Kaison was born with only 1/2 of a functioning heart.
As you can see in the photograph, the left ventricle is very very small. This is a VERY serious heart defect. Many children born with HLHS don’t live. In fact, any children born more than about 25 or 30 years ago did pass away – there was no treatment options available for babies born with HLHS. Sometimes people ask me what Kaison’s prognosis is and I honestly cannot answer that question. There are no people older than about 30 that have HLHS to know.
The treatment for HLHS includes a series of THREE open heart surgeries. I’m no cardiologist so I really don’t know what each surgery entails – I just know that it’s completely heartbreaking to see your 2-day old Grandson look like this:
I want to bawl my eyes out just looking at this picture again. Anyways, Kaison is now 11 months old and has had the first 2 surgeries and now looks like this:
Seriously, do they come any cuter??? On February 18, he will be 1 year old. We are so incredibly blessed. Just this week, 2 babies that I have been following with HLHS passed away. One was 2 years old and the other was only 7 months. I can’t even imagine…
So the point of my post here is two-fold. My first question is this: How the hell do I get in my RV and leave this cute face for any length of time??? Right now we are in Tampa (by the way, we bought a new RV!!! I’ll post about it later!) and I’m dying to squeeze that little face that’s now 600 miles away from me. I miss him and my granddaughter so much it aches. So how can I ever drive away for months at a time? It seems impossible!
The second point of my post is this: To increase awareness of congenital heart disease. This beautiful video was shown recently on The Today Show. Each year, 40,000 children are born with some form of congenital heart disease. In a world of tubes and oxygen, surgeries and beeping monitors, parents and medical teams battle to keep their tiny hearts beating against the odds – but it’s the children themselves who are the true heroes. Please take 4 minutes and watch:
Also, if you can find it in your heart (pun intended) to donate to Addy’s CHD Research Fund HERE. This money will be used to fund further research into congenital heart defects and to raise awareness of this terrible birth defect. In fact, when our Kaison was born, we had his cord blood banked. Mayo Clinic is now starting research on using this cord blood to help these children regrow the missing part of their hearts – how awesome would that be??? You can follow our Facebook page here at Kaison’s Journey With Hypoplastic Left Heart Syndrome. Please feel free to give our page a “Like” and join our group of supporters!!
From the bottom of my family’s heart, thank you for reading this post. Thank you for taking the time to learn more about congenital heart defects. Thank you for your donation to Addy’s Fund if you did so. God bless you all.
Carol & Jim
Jake, Samantha, Kaison and Willow Mellema