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RCH becomes second home for Ezekiel

Ezekiel was born by emergency cesarean at 35 weeks gestation following placental abruption causing fetal distress. Up until 2 days prior to birth I was told Ezekiel was perfectly healthy. I had a scan in hospital due to reduced movement where it was discovered Ezekiel had moderately enlarged ventricles in his brain (Ventriculomegaly).

Because I was already in premature labour we had no time for transfer to Melbourne for tertiary scans. So it wasn’t until Ezekiel was born and in the special care unit that it became clear just how complex his needs were and he was referred immediately to RCH for ongoing specialist care. Ezekiel has been diagnosed with a rare craniofacial condition called Goldenhar Syndrome. He was born with 2 holes in his heart, spinal abnormalities, multiple brain malformations, unilateral conductive hearing loss as his left ear did not develop, he has dermoid cysts in both eyes and Duane’s syndrome in his left eye limiting his ability to move it past the midline and the list goes on.

Ezekiel is now 14 months old and under the care of many different specialist teams at RCH including Cardiology, Audiology, Ophthalmology, Neurosurgery, Maxilofacial, Craniofacial, Genetics, ENT, Gastroenterology. He required neurosurgery in December to place a Ventriculoperitoneal Shunt to treat his hydrocephalus relieving pressure from his brain and spinal cord. Ezekiel is also extremely small for his age both in height and weight despite adequate nutrition and he is undergoing further testing to find a possible genetic cause for his growth failure. He has been tube dependent for feeding since he was a newborn.

Needless to say RCH has become a second home for Ezekiel and I, there is no other place I would trust with my sons life and as difficult as our journey has been, I find great comfort in the expertise of this hospital, the nurses, Volunteers and doctors are more valuable than they’ll ever know.

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