He was in need of an echocardiogram, an ultrasound of his heart, to see what was causing the murmur. There are no facilities in our region that provide this service and we knew a trip to melbourne was on the cards. We suspected it was his 'PDA' a small duct babies have in their hearts that usually close over within 48hrs after birth that can sometimes be fixed with medication.
On Wednesday, Oct 14th, he was flown down to the Royal children's hospital in Melbourne to have the Echo. The results showed that it wasn't his PDA, that he actually had a number of heart defects but he had been coping so well with it all that it wasn't obvious earlier.
His diagnoses are
partial AVSD -atrioventricular septal defect, meaning the wall between the top two chambers of his heart didn't form properly and his blood is mixing between the chambers.
Hypoplastic aortic arch- a large narrowing of the main blood vessel that deliveres blood to his body and organs
Aortic stenosis- the valve that allows blood flow from the heart into the aorta is smaller than usual
Mitral regurgitation- a 'leaky valve' that isn't able to close properly and lets blood flow backwards.
After a few weeks of being on breathing support and allowing him to gain weight, on Nov 5th Elias had open heart surgery to correct the narrowing of his aorta and reconstruct the wall between the two heart chambers. At that stage the surgeons felt they were unable to repair the valve leak due to the small size and the complexity of the procedure in hopes that he would be able to cope with the leak until he was atleast a few years older.
Elias progressed from NICU and is now on the cardiac ward at RCH, unfortunately his progress now has come to a stand still, unable to gain weight or breathe on his own, the specialists feel there is no better option than to once again perform open heart surgery in hopes to correct the valve leak.
His next surgery is scheduled for Friday 27th November.
Elias will require ongoing therapy and treatment once he finally returns home. Being born prematurely and being admitted to hospital for so long means he will already have some developmental delays, he developed vocal cord paralysis from his first surgery as well as an oral aversion which will both likely be exacerbated by having a second surgery especially since he was never able to fully establish feeding beforehand.
Some extra financial support will mean Kelsey will be able to have an extended time off on maternity leave once Elias is able to return home and will help cover costs of long term speech and occupational therapy for Elias as well as any other supports he may need.
Any donation is greatly appreciated and I will keep you up to date as the details come to hand. x
- Maddie Hocking
- Janet Duckworth
- Shae Hill Fundraiser
- Robyn Old
- Marcus Kennedy
Organizer and beneficiary
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more