Here, Elissa Hagar, 33 tell the story in her own words.
H￼e’s perfect,’ I sighed to my hubby, Rodney, 33, as I cradled our newborn son, Eli. I relished my new routine of bathing and nursing our precious bub. When he was 10 days old, I noticed he wasn’t hungry. He’d slept for hours, too, and was barely moving. Although I was a new mum, I sensed something wasn’t right.
Worried, I phoned a medical hotline and was told to take Eli straight to hospital. By now Rodney was home from work so we rushed Eli to the nearest hospital. When Eli suddenly went limp, a swarm of doctors and nurses raced around our baby. ‘We can’t get a pulse!’ said one, struggling to find a vein in his tiny body. Attaching him to loads of equipment, they fought to resuscitate Eli.
‘He’s gone into cardiac arrest,’ I overheard, horrified. I burst into tears, terrified for my son. How could our healthy baby boy suddenly be fighting for his life?
Rodney, who was in shock too, held me, trying to offer comfort. Eli was rushed by ambulance to Westmead Children’s Hospital and placed on life support. ‘Prepare for the worst,’ a nurse told me gently, as Eli fought to survive. ‘Babies are really resilient, but sometimes they just can’t go on any more.’
We were told our son had an enlarged, weak heart, due to either infection or cardiomyopathy, a disease of the heart muscle. Miraculously, he was clinging to life. Just when it looked as if there was no hope, he’d rally. Then, as he seemed to be recovering, he caught a cold and became sicker than ever.
After two agonising months, Eli made it through. Five months later, Eli was diagnosed with a rare condition called Barth syndrome. Sufferers have cardiomyopathy, weak muscles and are more susceptible to infections due to a lack of white blood cells. Eli’s on daily medication, has trouble eating and needs regular physiotherapy to strengthen his muscles.
Now aged three, he’s a friendly, bubbly little boy who goes to kindy once a week. He now has baby sisters, twins Eden and Ivy, whom he adores. He loves footy so we were thrilled when the local Hills Bulls under-16 team made Eli their mascot and helped raise funds for his medical care.
I’m so glad I trusted my instincts and I’d urge other mums to do the same. Eli is our little battler.
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