"Our child's diagnosis with epilepsy, due to focal cortical dysplasia, and our resulting journey so far..."

About: Princess Margaret Hospital for Children

(as a parent/guardian),

G'day.

The short version of our story is this.

Our child started having small episodes about four weeks ago. Two GP trips led to a PMH (Princess Margaret Hospital, Perth) emergency trip, which led to being admitted for the better part of a week. Our child was diagnosed with epilepsy, due to focal cortical dysplasia.

We were discharged, only to be readmitted a little over a week later when the first round of medications didn't work. Another almost week long stay, more tests, new medications, more tests, another change in medications, and discharge (with a quick trip to the emergency department a little under 24 hours later, but no readmission).

As you can see, it hasn't exactly been the greatest month of our lives.

My husband was admitted to the hospital twice in the 90's, as a patient, and he has always had terrible memories of the experience and a deep aversion to returning, for any reason. But on coming back (reluctantly) with our baby, we discovered that all his fears were just the overactive imagination of a child. The hospital and staff were friendly, helpful and excellent at their jobs.

All the staff who helped us were great - David, our first nurse in ED, Ben, Rosaleen, Robin, Dan, Danni, Amanda and Phoebe on Ward 5A,. Marion and Kate in recovery, Dr Clare and Chandamal in Paediatrics, Dr. Kava and Elliot, as well as the two doctors in Neurology. Ann and Gaby, the help staff on 5A, as well as the indian lady who does the cleaning and the food on 9A (I'm so sorry, we never got her name), and ALL the nurses on 9A - Megan, Michelle, Hannah, Vicki, Astara, Lauren, etc, as well as John the Pharmacist...and anyone else listed in our file as having helped us who we may have missed.

Actually, saying that - we never got the name of the anaesthetist during our child's MRI, but the time she took with us before the procedure probably saved us from crashing and burning. We were overwhelmed, heartbroken and terrified that our little one might be dying and the anaesthetist came out, spent some time with us and let me carry our child in to be put under. It was still hard, but nowhere near as hard as it might have been, being shut out by some "rules and regs" style doctor. She clearly cared, and we appreciated it. Please thank her for us, if you can find out who she was.

We can't speak highly enough of the hospital and it's staff, and as horrible as the thought of being in and out of hospital for the next year or two is, we have no complaints (and a lot of reasons to be thankful) that PMH is our hospital.

Thank you all for everything.

Responses

Response from Michelle Dillon, Executive Director Princess Margaret Hospital, Child and Adolescent Health Service - WA

picture of Michelle Dillon

Dear aboots

Thank you very much for your post on Patient Opinion in relation to your child and the services your family has received at Princess Margaret Hospital for Children (PMH). I really appreciate the time you have taken to share your family’s experience at PMH with me.

I would firstly like to acknowledge that a hospital visit for both the child and family can be a challenging and stressful time, and I empathise with you in this regard.

The staff at PMH are committed to providing the highest quality health care for children and adolescents and it is so wonderful to see this reflected in your experience.

I was delighted to read of your specific mention to the staff in the Emergency Department (ED), Ward 5A, Recovery, Paediatrics, Neurology, cleaning and food staff, staff on Ward 9A, anaesthetic staff, and Pharmacy. Our Chief Executive, Professor Frank Daly, was also very grateful to read of your feedback and positive experience from your visit to PMH, and has requested for the specific staff you mention to be recognised and for your story to be shared with all relevant staff and their teams.

Once again, on behalf of all staff at PMH, thank you so much for taking the time to share your family’s experience at PMH. I would like to take this opportunity to wish you all the best for your child’s recovery.

  • aboots thinks this response is helpful
    {{helpful-1}} other {{helpful-1 == 1 ? "person thinks" : "people think"}} so too

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