When we found out last fall that Violet had been misdiagnosed and actually had a potentially fatal birth defect rather than CVS, I think I thought I’d get over it pretty quickly. But in fact it’s been the opposite. I feel a lot of guilt that she so narrowly survived, and that if I had fought harder for her sooner we never would have been in that place. I also feel disappointed and untrusting of a lot of the doctors and specialists we had over the years. There’s an intense fear that Violet’s doctors may have misdiagnosed other patients, and that they might not get as lucky as she did.
A few weeks ago I stumbled across an ad for a community theater’s production of Next to Normal. I’ve been dragging my kids to shows they weren’t mature enough to see for the passed 5 years, so figured Next to Normal was par for the course in our family. I’d been dying to see it in some way, shape, or form since last September.
I prepared myself for below the bar acting and cracks on all the high notes, but it was perfect. And the show brought me right back in time. I mentioned last fall that watching Next to Normal on YouTube saved my kids life, I always meant to post the whole story. I really attribute her surviving to that show, the doctor in the ER, and a note from a mom that I got several years ago.
Every long story has to be summarized (which I’ve apparently done a terrible job at here since this post is longer than my college thesis), but in an attempt to summarize it’s sort of a repeat of this post, highlighting a different set of details.
A blogger friend said I should divide it into parts and post over the course of a few days, but I ain’t that kind of blogger so here’s a novel length post about how a Broadway show saved my kids life.
When Violet was a baby, my sister and mom got tickets for us to see the show If/Then. Violet was a few weeks old at that point, and we were in this place where I thought something was wrong with her and every single other person (husband, friends, pediatrician, etc) thought I was crazy. I didn’t want to go to the show, because I didn’t want to go anywhere without her. Eventually, my family talked me into going (I know, I know, who begrudgingly sees Idina Menzel? Me apparently).
After the show, I started listening to If/Then on Pandora. Brief summary of the show for those non musical theater nerds who might be reading: One tiny little decision to turn either left or right in a park greatly effects the outcome of a woman’s life. I know what you’re wondering right now: ♪ How can this make any difference? How could it matter at all? How do I make such a major event out of something so small? ♪ Well, one tiny little decision to attend a show greatly effected my life. IF you listen to If/Then on Pandora? THEN… Next to Normal will pop up.
Thus, I got hooked on the Next to Normal soundtrack. Brief summary of the show for those non musical theater nerds who might be reading: A woman struggles with mental illness and delusions which began 16 years earlier after the loss of her infant son.
I know that seems like a sad show for a new mother, but my baby was sick all the time, and I felt a little bit crazy. Listening to a musical about a mom who was a lot more crazy and a baby who was a lot worse off simultaneously made me feel less alone as well as lucky. At least things aren’t THAT bad I’d always say to myself.
When Violet was 17 months old she had a particularly bad episode of vomiting. We’d brought her to the neighborhood ER a few times and the pediatrician, but as usual no one was concerned. I have this vivid memory of looking at her one evening and thinking to myself “My kid is going to die. My kid is going to die and no one cares.”
I put on the song How Could I Ever Forget from Next to Normal ♪ Just 18 months old. So cold… ♪ She was so cold. I heard the voices of all the doctors we’d ever brought her to in the passed reminding me that I was just being a nervous mom, and I picked up her limp little noodle body and brought her to a new ER. The doctors in the emergency room were shocked at how dehydrated she was. One later told me that the mortality rate when things got that bad was about 50%. What if I hadn’t put that song on? Would she have…? Saved by the show once, but that was just the beginning.
While in the hospital I got a message, which was passed on to me by a friend. I’ve shared it before, but here is a snippet again to refresh your memory:
“I knew from the time my son was about 8 weeks old that something was wrong. And every time I asked our pediatrician about it I was dismissed as a “first time mom”…babies cry, he has colic, babies spit up, etc. etc. I remember distinctly coming home from his 4 month visit where the doctor had told me he had colic and crying on the way home…and my husband telling me “he’s fine, stop it. The dr. said he is fine.”
Well he wasn’t fine.
I truly believe your mommy gut knows when something is wrong. Fight until you get a doctor that listens. Fight. You know your baby better than anyone else. I would request that an upper GI be done and have a consult with a pediatric GI specialist.
My son would throw up just like this. When he was a baby he would throw up after every feeding (soak a receiving blanket). He died at 27 months of a volvulus of the cecum.
24 hours before his death he began running a fever, he vomited just a couple of times…we took him to the pediatrician 15 hours after the fever began and he was diagnosed as having a “virus”. They palpated his abdomen. I (paramedic by trade) palpated his abdomen multiple times and he never had pain.
Just hours after we left the pediatrician’s office he coded and died in the ER.”
The note was spot on, and for a short time I was so sure this was what Violet had. But the pediatric gastroenterologist shot me down, and through a series of mistakes, Violet was diagnosed with cyclic vomiting syndrome. For the next year and a half we operated under the cyclic vomiting syndrome diagnosis. Medicate and hydrate – thats the protocol for CVS. Go to the ER if your kid looks dehydrated (which my kid always was).
Part II (Feel free to take a short intermission to use the bathroom or refill your beverage. I’ll wait.)
When Violet started vomiting in September, we did the normal things (try to force gatorade and zofran). On day 3 we brought her to the hospital as we always did, our insurance had changed and it was a new hospital where they didn’t know her. The attending physician wasn’t concerned. After an IV, friendly smile, and a handshake we were sent on our way.
The vomiting wore on. One evening Rob said he was heading off to bed. I knew I should join him, but also knew I wouldn’t be able to sleep anyway. On a previous episode Violet had gone into seizures. That little blue body was etched in my mind, and I had become afraid to sleep when she was sick out of fear it may happen again.
I started surfing around YouTube to pass the time, and stumbled across an entire recording of Next to Normal. Even though I’d listened to the cast recording 5 or 6 million times by then, I had never seen the show in its entirety.
I laughed. I cried. Even when illegally filmed on a shaky hand held camera, it’s a very good show. An hour and a half in came my old song, How Could I Ever Forget? I felt all the usual feels. Sadness for that family, thankfulness my daughter wasn’t as bad off as the child in the show. The main part of the song ended, and a few more musical beats continued that I’d never heard before…
♪ Our son, how did he die?
He was sick.
With what? Why wasn’t he treated?
Something the doctors all missed. The clinic, the ER, each specialist. They said babies cry. Allergies, gas, who knows why… We stayed up all night. Most nights you slept at his side. But still he just cried and cried. ♪
I knew that desperation. In the beginning, I’d been told babies cry. I’d been told allergies, gas, and that no one knew why. I’d stayed up all night. My kid always slept by my side. Still, she cried. And I cried while I watched it. The show continued and I found out baby Gabe had died from an intestinal obstruction. I’d listened to the music so many times, but since these parts were not on the cast recording I’d never known what happened. I think I’d assumed SIDS, when babies die suddenly in books/movies it’s usually from SIDS.
I googled intestinal obstruction. The first article that popped up was titled something like “Intussusception, Volvulus, and Intestinal Blockages in Children” I scanned the article, a few words seeped into my consciousness. Intussusception… intestines telescope back in on themselves… volvulus… intestines twist and restrict blood flow…. intestinal blockage…. most often caused by tumors or ingesting foreign objects…. I continued down the page briefly passing over words like intestinal death and necrosis. My heart skipped a beat when I saw the word fatal. I remembered little Ethan whose mother had sent me that note so long ago. “babies cry, he has colic, babies spit up, etc. etc.” That note seemed so similar to the lyrics in the show. Gabe may have been a fictional character, but Ethan was very real little boy. I flicked the monitor off. It was 1AM and I could hear Violet crying in her sleep, a sure sign she would throw up soon.
I brought Violet back to the ER. The episode was odd, it was lasting much longer than usual, and she was throwing up a lot during the night but acting okay during the day. “Hey, you don’t think she has an intestinal obstruction do you?” I asked the attending physician in the ER. She smiled at me, “No, this sounds like her normal thing.” “I just thought maybe she could have swallowed a rock or something. We went camping right before this started and she was putting a lot of junk in her mouth.” She kept smiling and telling me this was all normal enough for CVS. She did offer to admit Violet, but made sure I understood she did not think Violet needed to be admitted. “I’m probably worrying too much,” I said to her. “Probably so” she agreed. As I left the ER I reminded myself, your kid is not like Ethan and Gabe, your kid is fine.
The next few days I couldn’t get the song out of my head… ♪ Something the doctors all missed. The clinic, the ER, each specialist. They said babies cry. Allergies, gas, who knows why. ♪
On day 12 I texted the babysitter from work to ask how Violet was doing “Good! She just fell asleep. She was so sleepy she didn’t even want stories.” It was 9:30 in the morning and she wanted to take a nap and skip stories. This was not my kid. I had the usual internal fight with myself (leave work and take her, Erin she’s fine they said she was fine, no she isn’t! I remembered the note from Ethan’s mom so long ago Fight until you get a doctor that listens. Fight. You know your baby better than anyone else.). I was back in the ER a little while later, panicked but still internally arguing with myself about whether or not we should even be there.
Violet vomited as the doctor examined her, “Wow!” the doctor exclaimed. She looked worried. No one in a hospital had ever worried when witnessing Violet’s projectile bile vomit before. The doctor asked a lot of questions. She cared about people, I could feel that while talking to her. She could have so easily brushed me off. I absolutely hate to say this, but I absolutely know its the truth: if she had told me not to worry, I would have listened to her. The doctor we had a few days earlier is proof of that. But, thank whatever God you believe in, because this doctor was different. When I opened my mouth and nonchalantly said “intestinal obstruction” I assumed I’d be told I was worrying too much again, but nope, this doctor had already made plans to investigate.
Everything after that was such a blur. It was confirmed she did indeed have an intestinal obstruction, but my mind froze over and I felt unable to absorb anything anyone was saying. The surgeon drew pictures for me. He underlined things and pointed all around. “It’s twisted, right here.” He said while identifying a scribbled section of his drawing. He left, and I sat in the PICU waiting for her to emerge. I pulled the drawing back out of my purse. Underlined and in big capital letters was the word “VOLVULUS.”
Volvulus. The thing her doctor told us so long ago that said she couldn’t have. The same thing little Ethan had. Something the doctors all missed. The clinic, the ER, each specialist.
You all know the rest of the story right? Everything went well and they all lived happily ever after. I still get goosebumps remembering the voice of the surgeon telling me after surgery that if they hadn’t caught it, she likely would have died in the next few hours. Violet recently asked me, “Mom, remember that time I threw up and that princess doctor with brown hairs said ‘WOW!'”
Oh kid, How Could I Ever Forget?