Editor’s Note: James Plews-Ogan, MD, is a former pediatrician with UVA Children’s. Diagnosed with ALS in December, he works to improve the prognosis for others with the disease. Read his story.
As a mother, this is the moment I hate to remember. It takes place in a cramped, white room. Four burly orderlies, also all in white, surround the exam table. Under their large, muscular hands, my 8-month-old son writhes and screams in terror, as a nurse attempts to find some place on his body where she can insert an IV. He is so dehydrated that the options are limited. Eventually, they attach the needle to his head. He is still screaming.
Fast forward to the next day, and that same baby is in my arms, giggling and totally fine.
My story had a happy ending. But it almost veered the other way.
It was my kids’ pediatrician, James Plews-Ogan, MD, who made the difference.
Mystery Symptoms
The symptoms started abruptly.
We were in the car, my mom and I and my two young children, on a trip in Texas, in the middle of nowhere. Sam, the baby, started having bouts of wrenching screams every hour on the hour. Nothing could soothe him. He nursed, then spat everything up. Then he’d calm down, get tired, only to start up again, in pain. What could it be? My mother and I were mystified. Was it a new tooth? Food poisoning?
This went on for hours. And hours. And hours. Vomiting yellow liquid, screaming. And eventually, blood in his stool. “Emergency room,” Mom and I agreed.
I don’t blame the tiny county medical center for the misdiagnosis. It can happen. It was 2 a.m. They looked at the blood-filled diaper and concluded the cause was constipation. They sent us to an all-night pharmacy for Miralax. “He’ll get better,” they told us. We believed them.
Sam got worse. Nothing was staying down. Blood kept coming. No sleeping. Fever. And then the beginning of panic, blurry Google searches, desperate medications.
Finally, I called our pediatrician back home in Virginia. He’s an old-fashioned type of doctor: Kind and soft-spoken, he’s the only doctor in his private practice, he makes house calls, spends appointments letting the kids play, takes time to chat, really gets to know you. Paging him at 4 a.m., I knew I would reach him and no one else. I knew I could trust him. I just didn’t think there was much he could do being so far away. But I was desperate. There was still part of me that thought maybe I was overreacting.
Ogan called back and right away he identified the problem: Intussusception.
What? I’d never heard of it, nor could I really pronounce it.
“Get him to the nearest children’s hospital you can, as soon as you can,” he told me.
What is Intussusception?
As Ogan explained to me later, intussusception “is when the small bowel telescopes in on itself. A weak point or place shoves into the other part and when that happens, it gets swollen and nothing can move through. It’s an obstruction.”
I had never heard of this, and with good reason: While it’s the most common abdominal emergency for children under age two, and the most common reason for bowel obstruction in babies, it’s still, overall, not that common.
Some things to know about intussusception:
- It usually occurs in older babies, before the toddler stage
- Boys get it more than girls
- There’s no real “cause” for most cases; as Ogan told me, “it just something that happens randomly”—so, no way to predict or prevent
Treating Intussusception
Sometimes, barium enemas are used—“they can be both diagnostic and therapeutic,” Ogan says. In other cases, a provider might use an ultrasound for diagnosis and, if damage has occurred, surgery could be required to repair the bowel.
Symptoms include:
- Severe abdominal pain that seems to come and go
- A red clotted or jellied stool
- The inability to hold milk or food down while vomiting up bile
- Swollen belly
- Pulling the legs to the stomach
- Drowsiness
If intussusception goes untreated, your baby may go into shock. Eventually, irreversible damage can happen and then infection or death.
A Simple Save
I don’t know why the little emergency room didn’t know what was happening with Sam. But I’m grateful Ogan did. If he hadn’t been available, if he hadn’t known his stuff, things could have ended disastrously.
But he was available, and we were raced to the nearest hospital, about two hours away. A sonogram confirmed the diagnosis. Sam was given an air enema that blew his bowel back into place. We had made it just in time—he was so dehydrated, his veins had flattened, leading to the IV incident. After the procedure, he wasn’t allowed to nurse; I just had to hold him and comfort him as best I could. We spent the night in the hospital. And he was just fine.
The thing about intussusception, as I learned first hand, is that it’s easy to fix, but only if you know what it is and catch it soon enough. It disturbed me that I had never heard of it—and pretty much most people I talk to have never heard of it, either.
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That moment, the one I don’t want to remember? We all have moments like this, ones we wish we could ditch but that stick out, all the same, reminding us of when an emergency took over our normal, everyday lives and gripped us in fear.
But I’m glad I remember. It not only reminds me how lucky I am that things worked out, but it also gives me a chance to share what I learned, so that maybe you, reading this, don’t have to suffer the same thing.
hello my 6 month daughter suffered intussusception and underwent surgery for it. help understand the after math, like feeding post this condition and lifestyle and health of the baby
Thanks for reaching out! As with most conditions, the best thing you can do is talk to a doctor who can make sure to give you the right care for you and your specific situation. In my experience, after the procedure, my baby went back to normal and didn’t require any special attention. If your baby seems to still experience difficulty, see a pediatrician right away! You can find a primary care location or pediatrician on our website. Best of luck, Amy
Hey. My son had this a year and a half ago. He was only a year old. We almost lost him twice. I would like to talk to you some about your experience if you dont mind.
Danielle, that sounds like a terrible and scary experience! I’m so sorry you had to go through that. I’ll email you. Best, Amy
It’s been a while since you posted this but I HAD to comment. We are just home from hospital after what I thought was intususseption. My eldest had it at 9months we spent 5 days on the children’s ward before diagnosis and were then blue lighted to the nearest paediatric specialists, never had I seen a baby so lifeless, like your son the only place for an IV was his head. He’s my sensitive 6 year old now. This time with my youngest all the pain but none of the symptoms, unexplained intermittent abdominal pain with such intensity and then period of calm. Thankfully a virus causing a swollen lymph node were the cause this time but reliving the past was the most terrifying thing, even now we’re home I worry still.
Kerrie, That sounds horrifying! Nothing’s worse than your baby sick and you don’t know what the problem is! Thanks for your comment, and I’m glad that all is well – we can’t protect our kids from all the ills of the world, but we can be there for them when things happen – your children are lucky to have you there for them!
nice blog and very easy to understand your blog
Hello my grandson was diagnosed with intussusception a few months ago. He was 4months.
The experience was very scary because he was in my care .
He wasnt eating,I couldn’t keep him awake.
He was just lifeless.
I called my daughter(she’s a young mother) she was terrified.
The doctors instructed us to bring him in but she had to go alone due to covid-19. After he was seen at the doctor’s office,they directed her to the ER immediately.
She is a scared mother with a lifeless baby ,during this difficult time. And it made me feel useless because I couldn’t help my baby girl. She was crying because he hadn’t eaten since 7am and by this time is was around 9pm.. Doctor was trying to get an IV started but there was no luck.
They tried his arm and his ankle several times but again no luck..
Finally a doctor came in and said they will have to put it in his head. At this time my daughter was like mama I cant allow them to do this..I explained, they know what they are doing because he need fluids or we will have bigger issues.. she cried like a baby, and I’m trying my best to hold it together for her..
Finally another nurse came in and she tried the angle one more time and it was a success!!
He was hospitalized for 4days for observation..
Oh boy, when he came home, we all wanted to hold him and love on him as before.
And I do have a question,
Did anyone experience any side effects from this..
He doesnt like to drink milk anymore(we’ve tried everything from formula to now silk soy)
Seemed a little delayed with mobility skills(sitting up, crawling, reaching, etc)..
Hi Amy, my 9 month old son is in recovery from intussusception. These were some of the scariest few days of my life! Within hrs of the start of his symptoms, I could barely recognize him. We almost waited overnight to “watch and see” per the pediatrician but decided to head to the ER instead. It was one of those times I felt truly grateful for being in Northern VA, knowing that we have some of the best medical care in the world. My little guy started daycare just 4 weeks ago, spent most of these 4 weeks sick as a result and the past week in the hospital. Though he enjoys his new little friends and the staff is amazing, I am terrified to send him back for fear this will happen again. Any advice you have on this fear of exposing them to the world would be great. I know this is an older post so not sure if you are even monitoring the comments but it was good to read this from a mom and not a hospital like all the others! I am proudly reading this from the UVA blog, his attending pediatrician at Inova Fairfax was a Hoo as well 🙂 WaHooWah!
5/26/2021- (It would be great if posts were dated.)
Someone I know works at a daycare and had an 8 month old boy develope intussuseception today. The staff recognized that he was not acting his normal little self. Inconsolable crying bouts followed by passing out/ lethargic behavior. He was sweating but no fever. When he began to vomit they immediately called 911. While waiting for help to arrive his skin was becoming cool & clamy. He ended up needing surgery, but prognosis is good. They acted quickly and saved this little boy. Going forward they will monitor and watch him for any similar changes or symptoms. They are not I w also more aware of the symptoms should something like this ever happen again with any other child. Ask your daycare if they are familiar with the signs and symptoms of intussesception.