Little battlers: No cure for Logan

Last updated 05:00 20/01/2014
ONGOING CONDITION: Logan after his open heart surgery.

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Little battlers: Kids beating the odds

Four years on from our darling Izzy's death Life with a chronically-ill child: Our hour-to-hour, minute-to-minute lives Tears at the school gate for my daughter with cerebral palsy A heart disorder won't stop Kayla I was 'too afraid to kiss my son' Charlie has half a heart, but a full life 'We cry every day knowing the pain to come' Year without Izzy the 'toughest' 'A choice no parent should have to make' This baby was given one week to live

Logan was born late Christmas Eve 2004, a little early but healthy.

After being home for a few days he was readmitted back to hospital with jaundice and this is where our heart journey began.

That night the doctor found a heart murmur but the x-rays were inconclusive.

I wasn't overly worried at that point.

Then about 6am on New Year's Eve a nurse came in, took one look at Logan and rushed off to sound the alarm. He had started to go into heart failure.

We watched as our tiny baby was subjected to numerous tests, ECGs, echos, blood pressure, blood test, and x-rays.

They wouldn't let me feed him and we had no idea what was going on.

Eventually they told us that they were airlifting him to Starship Hospital. He left in a helicopter while we drove up.

My lovely sister-in-law sat and cuddled with Logan while he had to have all the tests done all over again.

We were then give the diagnosis of coarctation of the aorta, hypoplastic left arch and bicuspid aortic valve. He needed urgent surgery.

Because of the timing they tried giving him some medicine (which had a side effect of potentially stopping his breathing) so they could postpone his surgery until January 5 when the hospital was back on full staff. Unfortunately that didn't work and he was wheeled off early on January 2 for open heart surgery.

Seeing him surrounded by all those machines and tubes everywhere was heart wrenching.

He recovered well, and was soon home with his older brother.

As a toddler he developed a great fear of doctors after the blood pressure machine pinched and bruised him. He would scream if they went near him.

These tests have now become normal for him. They can be uncomfortable and at times scary but he soldiers on. He is due to have an MRI next year to get a more in-depth view.

Life now is pretty good. He is an active kid who is friends with everyone.

He has to have yearly check ups at Starship and we are at a watch and wait stage.

He will need more surgery at some point to replace a heart valve and there is always the possibility that his arch will narrow again or an aneurysm may form.

I have days where the fact it is a life long condition gets to me. When I see him go blue while swimming, or fall asleep on the floor, or seem more tired than usual I immediately worry.

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I am grateful for my wonderful family and friends and I have found great comfort in immersing myself in the CHD (congenital heart disorder) community and wonderful organisations like @Heart.

Although he and other kids like him may look healthy, their scars may have faded and they may be staunch warriors, remember CHD can sometimes be repaired but it can never be fixed, there is no cure.

Our kids will live with this for the rest of their lives.

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