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My baby getting lost in the system.

Posted By Drayton94

"My baby getting lost in the system."

About: Perth Children's Hospital / Cardiology - Outpatient Clinic G

(as a parent/guardian),

When my baby was born at KEMH the drs picked up and noise in their heart, so they put in a referral to PCH cardialgy team to be seen at 6 weeks they never did see my baby even though we were down in Perth at the time for other appointment's, I've kept ringing the cardialgy team and they would always tell me that there is no appointment and they'll get seen in the Carnarvon clinic. My baby is now 8 months and after getting 4 referrals from ED and my GP they finally seen my baby last month. They diagnosed my baby with Atrial Septal Defect (ASD) with a 1cm hole in their heart and they've got to have open heart surgery before their 1st birthday.   

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Responses

Response from Ellen Taylor, Medical Co-Director, Medicine Division, Perth Children’s Hospital last month
Ellen Taylor
Medical Co-Director, Medicine Division,
Perth Children’s Hospital

Submitted on 10/04/2025 at 6:25 PM
Published on Care Opinion Australia on 11/04/2025 at 9:16 AM

Dear Drayton94,

Thank you for sharing your experience. I sincerely acknowledge the distress and frustration that this journey must have caused you and your family. Your determination and perseverance in advocating for your child’s health is commendable and I appreciate how difficult it must have been to persistently follow up on referrals while seeking answers.

Please know that your concerns are important to us, and we would like to look into what occurred in this instance. If you would be open to discussing your experience further, we invite you to contact the Child and Family Liaison Service by phone on 6456 0032 or by email at CAHSFeedback@health.wa.gov.au.

We hope to hear from you soon.

Warm Regards

Dr Ellen Taylor
Medical Co-Director Medical Division
Child and Adolescent Health Service

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