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Your Child with Special Needs: Preparing for a Child’s Surgery

Alethea Mshar
Special needs mom and Blogger
01/04/18  8:31 AM PST
Preparing for a Child's Surgery

My youngest son was desperately ill. He had been diagnosed with failure to thrive, but there was no clear explanation. I spent hour after hour pouring over symptoms on my computer, trying to figure out what his pediatrician could not. I suspected Hirschsprung’s Disease, but the doctor had her doubts. Finally, after day after day of watching my son get sicker and sicker, we asked for a referral to a gastroenterologist.

The relief was palpable when the Nurse Practitioner at the Gastroenterologist’s office was as alarmed as I was by my son’s condition. She moved quickly, working with the doctor, to order the tests my little guy needed. One of the recommendations she made was to meet with a surgeon to make sure that Hirschsprung’s disease was not the problem.

After a rectal biopsy, which is the gold standard of testing for Hirschsprung’s disease, it was determined that the problem was indeed Hirschsprung’s disease. The only treatment was surgical. I would do anything necessary to get our son healthy, and I thought I was prepared for him to have surgery, but when the day arrived I was beside myself.

I don’t think there is anything in the world that can prepare a parent to endure a child’s surgery.

He had gotten ear tubes already, so I thought I knew the drill, but this time was different. The surgeon, a tall, strapping man, scooped my baby up off his cot and carried him through the double doors. Watching them go, I could hardly stay on my feet. They told us an estimate of the time the surgery would take, and I’m pretty sure I checked the clock at least eight times every minute.

The surgery took longer than expected, and panic set in. My imagination took wild turns, considering every horrible scenario that could possibly take place. Every second that ticked away felt like an eternity. Every time the doors opened, the phone rang, or anyone moved, I jumped, hoping it was news about my son.

It was a matter of hours, but possibly the longest day of my life. When the surgeon emerged, I lept up and ran toward him, fearing the worst. There was much good news and some bad, but the essence of his message was that my son was in recovery and doing okay.

That was the first major surgery he’d had, and though many have happened since, the experience is always the same. You would think it would get easier with experience, but it never has, and I doubt it will. Sending your child in for major surgery is one of the worst things a parent can endure. No matter how necessary, even life-saving it is, a child’s surgery is agonizing.

Preparing for a Child's Surgery

Resources on Preparing for a Child’s Surgery:

UCLA Mattel Children’s Hospital: Preparing for Your Child’s Surgery

Children’s Hospital Cleveland Clinic: My Going to Surgery Book

Adam’s Surgery Social Story

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Comments

2 Comments

  1. Posted November 5, 2018 at 6:14 pm PST

    Will my child’s behaviour change .

    If he has surgery to not have babies.
    He is not verbal and has has autism n a.d.h.d. since 2 and he is now 19.
    His behaviour has been an issue for the past 3 years it’s gotten bad.

  2. Aimee Sharp
    Posted January 23, 2019 at 10:22 am PST

    Hi Gracie. Thank you for your comment. We reached out to Alethea about your comment. Here is her response: “I don’t know the answer to your question, it sounds like a challenging situation. My heart is with you as you look into this and parent your child.” -Aimee, Shield HealthCare

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