Our journey with HeartKids

HeartKids is an amazing charity that supports families and children going through treatment for their various heart conditions.

This charity is very dear to me as 7 March 2019, our little man underwent corrective surgery on his heart at only 10 weeks old.

But let me take you back to the beginning...

Our 20 week scan

We were so excited to find out the gender! We had taken our daughter, Mackenzie, out of kindy for the day so she could be with us when we found out - she had of course picked "Unicorn Flower" as the name if she was getting a sister and "Baby Bear" for a brother. As the sonographer did all of the routine checks she was a little quiet, but that didn't bother us.. until she got someone for a second opinion. She was very reassuring that it was all ok, but just wanted a more senior person to take a look. She rattled off a few things about a right aortic arch, which we didn't understand, and referred us to the heart specialist for a closer look. This definitely wasn't what we expected, but alas we finished with finding out we were having a BOY!

The Specialist

After our specialist appointment we found out "Baby Bear" had a right aortic arch with aberrant left subclavian artery. Yep - lots of big scary words in that sentence! basically in a nutshell it's a rare anatomical variant in which the aortic arch is on the right side rather than on the left, and can form a vascular ring around the Esophagus which can lead to trouble eating and in some cases breathing. In some cases there is no effect on the person at all if the ring doesn't form, but it's hard to know until it happens.

Baby Franklin

21 Dec our beautiful boy was born - initial tests showing no signs of breathing difficulties and he was feeding well; he was a dream.

At around 1 month old, he started to breathe quite quickly and was projectile vomiting at least every second feed. We called and made the initial appointments with the heart specialists to have tests and ultrasounds to check his heart. In the meantime we put him on to an anti reflux formula to try and help him keep his milk down and continue to put on weight.

Ultrasounds showed that the vascular ring had indeed formed and we were sent for more testing and put on a waitlist for surgery. He was 6 weeks old at this stage.

2 weeks later, Franklin woke up in the middle of the night, gasping for air - it was the most horrific sound and absolutely frightening. I called our surgeon the next day and his surgery was brought forward.

The surgery

By all means it was a "simple" surgery - enter in through the side of his ribs, cut the vascular ring, and close up. We had multiple appointments with 3 different specialists and a million different questions answered - we were prepared and thought "we can do this, it's for the best".

The day of the surgery comes around; we dropped Mackenzie at school, and my mum came to the hospital with me for support. There were hours of waiting around, and the nerves and emotions were running high.. before we knew it, his name was called and I was giving him a kiss as they put him under and took him into surgery. I was blank, numb and just burst into tears. My gorgeous mum took me out to a cafe downstairs for a coffee while we waited. Finally after a few hours we were called - he was out and all went well. We went up to see him in ICU. I stayed with him for an hour while my mum went and swapped over with my husband looking after Mackenzie, and he came to the hospital to see him.

By this time it was 8pm and as we couldn't stay at the hospital while he was in ICU, we made the decision to go home to attempt some sleep before he was woken up the next day.

Of course, I didn't sleep, and was back at the hospital about 7am the next day to ensure I was with him as he woke up. He was so tiny, and there were so many tubes everywhere, I was tired and emotional and just wanted to take him home.

About lunch time after he had been woken up and most of the tubes had been removed, we were transferred to our room where I would stay with him until he came home. He could only have small feeds at a time, and cried because he was hungry, which just broke my heart, but he was making progress and that was a positive sign. But the ward was quiet. He slept a lot due to the medication, and I couldn't really hold him, so was left alone with my thoughts and emotions.

HeartKids Volunteers

On day 2, I had 2 lovely ladies from HeartKids pop in for a visit. They brought me a cup of tea and some bickies and just sat with me for half an hour checking on my wellbeing. I felt like a weight had been lifted - just talking, being distracted and reassured that it's ok to leave the room and stretch my legs and to not feel like I had to stay on the tiny couch 24/7. That even though my husband couldn't be there, that they would be popping in each day to check in on me.

And they did.

By day 4, I had gone for a quick walk to get some food when they stopped by, Franklin had been crying so with the nurses approval they sat in the room reading books to him until I returned 5 mins later. I was met with my usual cup of tea and biccies and joined them for our daily chat. This was a service I didn't think I needed; I thought I could do it on my own and didn't need any help; but they saved my sanity. That break in my day while my husband was at work reduced my anxiety and everything felt better. As Franklin improved they were so happy to see his progress, and even though we were only in there for 5 days, they made such a huge impact in my life.

But they do so much more than checking in on patients and their families! They are the only national charity dedicated to supporting children, teens and adults affected by congenital heart disease all over Australia. They even conduct research into the causes, treatment and management of congenital heart disease.

And now...

Our little man is now 2 years old and going strong! Many people don't actually know about his condition, as he's a strong, healthy, cheeky lad. He has finally been discharged from cardiology, and while we're still working on some ongoing issues due to this indent left by the vascular ring, you would never know that he was a HeartKid.

So now every March, as Franklin's surgery anniversary comes around, I remember those amazing women and try to give back and spread awareness for the amazing work they do in supporting families going through such overwhelming process.

Thank you to the amazing volunteers for all that you do, and being that shining light in someone's day!

xxxx

For more information or to make a donation, visit:

 www.heartkids.org.au