THE BLOG
01/09/2014 04:45 pm ET Updated Mar 11, 2014

There's a Second Tragedy in the Jahi McMath Story

ASSOCIATED PRESS

By Shannon Breuner Nelson

For weeks, the nation has watched as the family of Jahi McMath, the girl declared brain dead after a routine tonsillectomy at Children's Hospital and Research Center Oakland, begged to have her remain on life support. A few days ago, she was finally moved to a new facility.

While tragic for the McMath family, there's another tragedy in this story and that's the negative publicity for Children's Hospital and Research Center Oakland, a place my family and I have come to know too well. As the mother of a developmentally delayed child, I've spent more time than I'd like within the walls of that hospital.

Imagine taking your 1-year-old to the pediatrician for a flu shot and leaving with the news that his head size had jumped so significantly there is suspicion of a brain tumor. That's what happened to me. Shocked and terrified at what lay ahead, I scheduled an MRI for my son a week later at Children's Hospital and Research Center Oakland. It was the longest week imaginable. I cried when the kids went to bed, I Googled incessantly-- I basically spent seven days barely going through the motions of daily life.

On the day of the MRI my husband and I took our fasting and grouchy son to Children's Hospital. Although he had a cold the week prior and was already much better, he was deemed too congested to be safely placed under anesthesia. While grateful for the caution of the staff, I was devastated. I didn't want to wait any longer to find out if our son had a brain tumor.

The strain of the wait had taken its toll, and as I dissolved into a puddle and my husband sat with his head in his hands, we were given another option. If he did truly have a brain tumor, the staff wanted to move quickly. While it wouldn't be a complete scan, they offered us the choice to place him in the MRI tube awake with me on top holding him down. We would not be able to see every detail, but if a mass was there, it would be detected. We still would have to return for the complete scan, but the hospital staff was providing us knowledge and empathy. At that moment, that was a huge gift to our family.

Minutes later, my wide-awake son was restrained and strapped onto a wooden board. With a cage over his face, they attached an angled mirror to it so his eyes could meet mine during the procedure. As I started to cry, the nurses surrounding the MRI machine hugged me and told me to be strong, that he needed to look at me to stay calm, then they slid us both into a pediatric-sized MRI tube.

It was loud. And tight. His sobbing eyes locked onto mine for six minutes as I lay over him and tried to smile. I told him everything was going to be OK.

By the time the restraints were removed, the doctors already were telling us that while we needed to come back to be 100 percent certain, his initial scan was clear. The staff at Children's Hospital and Research Center Oakland took care of our son, and our family.

When you have a child who may be sick, there is a certain strength you find within yourself. You experience sights and sounds that will be imprinted in your memory forever. As a resident of Oakland, many of these occurrences have happened to me at this hospital.

I've sat and listened to the sound of an MRI machine beep for over an hour as it takes photos of my son's brain while sitting alongside the parents of a seventeen-year-old waiting to see how far his cancer had spread. I've waited for my son to come out of surgery while watching a little girl who had come in to get the port in her heart checked play.

I sang along with tears in my eyes as four nurses, a surgeon and an anesthesiologist all wearing surgical masks sang "Row, Row, Row Your Boat" in an effort to comfort my son as he fought and squirmed against being put under before a surgery.

I've been brought juice boxes and crackers and Kleenex by nurses just coming by to check on me as I wait for test results.

I've sat next to hospital beds in recovery rooms waiting for my son to wake up as nurses pile my bag with hand-knit hats, homemade pillowcases and stuffed animals to take home with me.

When a scheduling nurse felt our surgery time was too late and too long for an infant to fast, my son was bumped to the top of the schedule -- not because I asked, but because a thoughtful nurse thought it was best.

The people who work in this hospital are angels and heroes to many, many families like mine. Children's Hospital and Research Center in Oakland distributed 139 million dollars of charity care and benefits in 2012. Seventy-five percent of the pediatricians working at the hospital are on the "Best Doctors in America" list. Lives are literally being saved every day at this hospital.

As Jahi McMath's family tweets about being "free" from Children's Hospital and Research Center Oakland, the hospital and it's staff is bound by laws, forced to stay silent as a smear campaign and likely a lawsuit ensues.

The story of what happened to Jahi is unimaginable and devastating. However there are countless positive stories unfolding in that hospital every day, just as it's been for the past 100 years. That shouldn't be forgotten, regardless of any tweets or statements a lawyyer makes.