Charlotte Moxon - Road to recovery (ALCAPA)

Hello! 

My name is Emma Moxon mum of Charlotte Moxon.

On Saturday we presented to the Queensland Children’s Hospital due to a persistent cough which has lingered for 3 weeks. 

Charlotte presented extremely well but as a precaution they decided to do an X-ray. This X-ray showed an enlarged heart. Charlotte then had an ultrasound and an echo and I was given the heartbreaking news that our little girl had something very wrong with her heart. 

To say we were shocked would be an understatement. We came to hospital for a cough only to find out she has heart failure. 

We met with the cardiologist Saturday night and she explained what she thought Charlotte had - a condition called ALCAPA. we were then moved to the cardiology ward where we were told we would stay indefinitely until we found out what was wrong. 

Yesterday we met with Dr Lauren one of the senior cardiologists. She explained what they thought it was and what the plan of attack was. Charlotte had a CT scan yesterday and about an hour after we had a call from the doctor confirming it is definitely ALCAPA. She said open heart surgery will be required on Tuesday the 16th. 

Today Charlotte will undergo lots of tests and scans in preparation for surgery tomorrow. 

The doctors have said her getting sick was a blessing in disguise. If she hadn’t of gotten sick and they hadn’t of done the X-ray we might not have found out until it was too late. 

This condition if not treated prior to 1 is often fatal. 

ALCAPA is extremely rare and affects 1 in 300,000 babies. That’s 2-3 every 2 years in Australia. 

The symptoms are very similar to that of othercompletely innocent baby problems such as colic. The symptoms include: poor weight gain, poor feeding, irritability, fussiness, difficulty breathing, sweating, pale skin. 

I have been concerned about Charlotte since the start but was often dismissed and the cardiologists here said that this is extremely rare todiagnose. In 299,999 children the symptoms they have would usually be for something else such as colic but Charlotte was the 1. I will thank my lucky stars every day that I kept pushing for answers and we found out about this when we did. 

Everyone at the hospital is amazed at how well she has learnt to cope with her condition. She’s meeting milestones and doesn’t look unwell at all. They said her fussiness and irritability was probably her trying to tell us something waswrong and over time she’s just learnt to cope with things as best she can. 

The reason I have started this go fund me is to help support us financially through this time and any money that isn’t used will be donated to the Continental Heart Diseases Association. 

Neither of us will be working until Charlotte is in a stable condition post surgery and when this may be nobody knows for sure yet. Reece is driving too and from hospital everyday and as you’re probably aware parking around here is incredibly costly. The last thing we want to be worrying about is money and I don’t even want to be asking for the support but we want to reserve all our worries and energy for our little darling and not money so any donations or visits (to go for a walk with Reece or I) or meals would be greatly appreciated. 

Lots of love,  Emma and Reece Moxon and of course our little angel Charlotte.