Being a mum to a child with Hypoplastic left heart syndrome or hlhs. I am not going to go into the medical side of it, because if you are anything like me you have already searched the entire internet and found everything that you could possibly read on the subject.
I'm here to let you know that you are most definitely not alone.
I was thirty eight weeks pregnant when i got told that my unborn child had hlhs. They had missed it somehow at my twenty week scan. I was twenty one at the time and did not have a clue what this condition was. The doctor explained to me by drawing a circle on an a sheet of paper to represent the heart then he put it into quarters, he told me that this was what a healthy heart looked like and these were the four chambers, he then took his pencil and scribbled out half of the circle and then said that this is what my babies heart looked like........looking back I'm pretty sure he could of showed me a better way ......but hey ho that's the way i was told.
In that moment my whole life just came tumbling down, to this day I have no idea what that doctor said to me after that point, all I could do was stare at that piece of paper. My happy pregnancy bubble had well and truly burst.
I then submerged my self in finding out ever possible thing I could on this condition, and ill be honest with you there wasn't really that many stories that filled me with great joy. The more I read the worse I felt.
I remember how I felt as if it were yesterday, I had never felt so terrified in all my life and I remember thinking I wish I could just be pregnant forever, that way I knew as long as I was carrying him then he was safe.
Can you relate to this? Do you feel like you are totally lost and alone and no one understands how you feel? Well let me tell you that all that is completely normal. You are a mum, you want to keep your child safe, and when things are taken out your own hands it makes us helpless....trust me I understand, I'v been where you are now.
Oh!!!.....did I forget to mention, that the hlhs baby I was carrying is now eighteen!!!! yip you read that correctly, Lee is now officially an adult.....though I still question this most days (lol) This picture was taken on his actual birthday enjoying his first legal pint (sshhhh!) in our local pub. I organised a surprise party for him the week before his birthday, their was over eighty people there to help celebrate with him, and to say he was surprised was an understatement. He walked into a room full of people all shouting surprise!!!!! he just stood there staring then looked at me, I had to then tell him its his surprise birthday party for his eighteenth, he went slightly red in the face after he realised everyone was there for him.
So even though things were emotionally hard in the beginning and it felt like there was no hope. Lee proved them all wrong. I wanted to share this with you because I never want anyone that just been given this diagnosis to feel like they are alone in this journey, you're not. You are now part of a hlhs community.
Back in the day when I first found out like I said above there was hardly any info on this condition and Facebook was not even around........Luckily for you all that has changed. There is a charity in the UK called Little hearts matter who help support families just like yourself from all around the world. Their website is packed full with information on hlhs, too many topics to mention. I urge you to check it out.....and it gets better, they also have a Facebook page, they even have one called little hearts matter member group which is a fantastic group, its a private page so what ever you write on it, your family and friends on your Facebook friends list wont see. It's a great place to connect with other families who are going through the exact same thing as yourself, its also a great place to get things off your chest, its all fine and well talking to your partner or family but sometimes they just don't get it, they don't truly know how your feeling but you can rest assure the people in this group most certainly will.
Little hearts matter has been there for me from the very start of my hlhs journey. So I recently decided to donate £2 of every glass I sell to the charity, I was originally just blogging about gift ideas etc but ill be honest this did not excite me in the slightest and I always had it at the back of my head I would love to blog and share my story about hlhs. I read stories all the time of new and expecting mums just getting the diagnosis and it reminds me so much of my self. I love glass engraving, I love knowing that people from all over the world are using my glasses, it makes me feel great, I also love spreading awareness of Hypoplastic left heart syndrome and telling the world I have an eighteen year old son with this condition and there is light at the end of the tunnel. So I have now combined the two.....not only are you buying a lovely hand engraved glass for somebody, but you are helping support a great and wonderful cause. It truly is a gift with meaning.