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By Eden Strong
“If you remove her from this hospital, I will call the police,” the doctor literally yelled at me in the hallway of the hospital’s intensive care unit.
“Go ahead!” I yelled back, both frightened by not only what I was saying but by the tone I wasn’t accustomed to using. “Call the police,” I yelled again. “Tell them that a murder is about to occur!”
A single tear rolled down my cheek and splashed onto the floor. Shaking, I took a deep breath and glanced over my shoulder at the baby in the room behind me.
Lying in a crib and buried beneath a mess of tubes and wires lay one of my kids — my daughter, even 6 months old — and she appeared to be dying.
My baby was sick, and nobody seemed to care.
The first time my baby was admitted to the hospital was when she was 11 days old. She was running a fever and screaming with such intensity that you couldn’t help but feel her pain, but several days later she was released without any real answers and no diagnosis. The doctors assumed it was just a virus and a case of colic but my instincts told me they were wrong.
When I brought her in yet again a few months later, I definitely knew something wrong. I had found her in her bed, not breathing, unresponsive, and the most terrifying shade of purple I’ve ever seen.
I yanked out of her bed so fast that to this day I can’t tell you if the motion alone caused her to start breathing or if the whiplash I gave her jolted her heart back to life. All I know is that when I laid her on the floor to start CPR, she let out a whimper at first and eventually a hearty cry.
As I drove her to the ER, I didn’t know what lay ahead, but what I did know is that she needed help.
Unfortunately, help is not what I got.
What I got was a staff of people who hadn’t observed the incident and who (once again) attempted to write off what I was saying as “overly-cautious mom syndrome.”
But I knew. I knew what I had seen — and what it looked like was near-death.
There wasn’t a chance in hell that I ever wanted to see that shade of purple on the face and body of my child again, so I fought back. Quietly at first — asking for tests to be run and symptoms to be looked into further — and when that didn’t work, I fought louder.
And then suddenly there I was, arguing in the hallway of the intensive care unit with a doctor who had just put a tube in my daughter’s throat that would measure the acid in her stomach, a tube I was certain was not inserted correctly because she appeared to be choking.
“Ms. Strong,” he said to me sternly, “She is just trying to get used to the tube. She is not choking; she is fine. A nurse can help you pick her up and maybe if you try and nurse her, she will be fine.”
But she wasn’t fine.
Something was not right and I had absolutely had it with being brushed off. I demanded a hospital transfer and when the doctor refused to call for one, I threatened to leave with my daughter. If she wasn’t going to be helped there, she was going to be helped somewhere.
Finally, when I refused to back down, the doctor agreed to “take one last look at the tube placement.”
The tube was in wrong.
It had curled up in her trachea and was pointing upward toward her mouth. She was, in fact, choking. As the doctor tried to reposition the tube, a steady stream of blood began to run out of her mouth.
Despite my protests (and a near-physical altercation) I was forced to leave the room while they fixed the tube.
During that same hospital stay, I noticed that one of her IVs was running alarmingly fast. A bag a nurse had informed me was supposed to be infused over the course of 24 hours was a third of the way empty in 30 minutes. After paging the nurse several times and walking to the nurses station twice, I finally crimped the IV line myself and pulled the emergency cord on the wall.
I later found out that the nurse had set it up wrong and if my daughter had indeed received the entire infusion at the rate it had been going, her kidneys would have shut down, her lungs would have flooded, and eventually her heart could have stopped.
All because of a mistake.
As I sat in the lounge crying, head in my hands, another woman came over and put her arm around me. She told me it would be OK and my child was lucky to have a mom who cared so much.
And I did care — but I felt like I cared more than the people who were being paid to care about her did.
Today, my daughter is six years old. After my continued and unrelenting refusal to chalk her symptoms up to “a coincidence,” she was eventually diagnosed with an extremely rare chromosomal disorder, one that could have killed her if not caught early enough.
She has made amazing strides but I’m fairly certain that if I had left the care of my child up to the doctors alone, I would no longer have a child to care for.
People, parents especially, tend to blindly follow what a doctor says. We look to professionals for answers to questions we don’t understand and trust them to keep our children healthy.
But the problem is that under the lab coat and the fancy degree, doctors are simply just people.
They are people who, like everyone else in the world, don’t always know everything. They have good days and bad. Some care, others don’t.
The fact is, too many people trust a doctor when they should have trusted themselves. 210,000 people die from medical mistakes each year, and 12 million Americans are misdiagnosed.
My daughter could have been one of them.
A few years ago, my daughter needed a sedated MRI to follow up on the issue that had first landed her in the ICU. We waited for a while and eventually, the anesthesiologist came running into the room, apologized for being late, and started to push her hospital bed out of the room.
As if I were on drugs, I leapt over the bed, blocked the door, and stuck out my hand toward him.
“Hi, I’m her mom. She is 2 years old. She loves Mickey Mouse, bananas and bubbles. Before you came in here, she was coloring a picture that she wants to put on our fridge. She is not just your nine o'clock patient, she is an important part of my family. I’m trusting that you will take care of her and bring her back to me safely, because she is deeply and incredibly loved.”
He stood there for a minute, not quite sure what to think, and eventually he turned around, stuck out his hand, and said, “Hi, sweetheart. I’m a doctor and I’m going to take very good care of you today.”
I’m not a doctor, and I never will be — but what I am is the best advocate my child has.
Eden Strong is a single mother of two young kids, the founder of a nonprofit that serves abused women, and can be found speaking what’s left of her mind on her blog, It Is Not My Shame to Bear.
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