Charlotte's Intestinal Malrotation Story
My sweet Charlotte was born December 30th and weighed 6 lbs 4 oz. at 37 weeks gestation. Aside from the fact that the majority of her umbilical cord was behind her placenta, the delivery went smoothly. Charlotte passed meconium and peed within the first 48 hours of life.
Breastfeeding seemed to be going smoothly but I was worried because I didn’t feel like Charlotte had passed as much meconium as she should have. The doctors and nurses weren’t concerned, they told me “each baby is different.” Charlotte was my third child, and I knew this was true, but I couldn’t shake the feeling that something was not right.
By the time we were discharged three days later Charlotte’s weight was down to 5 lbs 11 oz. Due to her weight loss, we followed up with our pediatrician the following day.
Charlotte’s pediatrician was concerned and wanted to continue to monitor her weight frequently. I mentioned the possibility of tongue and lip ties to her. My two year old son had an unrevised tongue and lip tie which had led to several cases of mastitis, Charlotte’s were more restrictive than his and breastfeeding was incredibly painful. The pediatrician gave us a referral and we hoped a revision would help her feed better. I also mentioned to the pediatrician that I felt like Charlotte was still passing meconium. Her bowel movements were not at all what I expected from a breastfed baby. As newborns my two older children had several seedy mustard looking diapers each day. Charlotte’s were very dark, it almost looked like they had undigested food particles in them.
At eight days old Charlotte began forcefully vomiting after every feed. Her vomit was not bilious, instead it looked like semi curdled milk, and was sometimes foul smelling. After vomiting she immediately acted like she was hungry. Despite frequently vomiting she was smiley and happy, she didn’t appear to be in any pain.
I called to expedite Charlotte’s tongue tie and lip revision. At ten days old it was revised and we followed up with pediatrician the next day. They thought Charlotte’s continued vomiting might be caused by reflux and started her on ranitidine (Zantac).
Charlotte started to become jaundice. I brought her to urgent care and her pediatricians office, she had lost weight. I brought her in again the next day and she was down even more. Weighted feeds showed she was transferring three ounces per feed, but then she would puke it all back up. Four days went by without a bowel movement. We began giving Charlotte prune juice but it didn’t help.
I started to become very frustrated. It felt like no one was listening to me. I was averaging two pediatrician appointments a week. I heard everything, “overactive letdown,” “hindmilk/foremilk imbalance,” “breastfed babies can go up to ten days without pooping,” and “some baby’s are just happy spitters.” My mom instincts kept telling me something was wrong to the point I felt like having a panic attack. My hair started to fall out due to the stress.
Two different pediatricians thought Charlotte might have had pyloric stenosis due to the way she immediately vomited after feeds then acted hungry again. My aunt had a foster son with pyloric stenosis and for some reason in my gut I didn’t think that was what was wrong with Charlotte. I googled pyloric stenosis and thought it sounded like a possibility. Charlotte’s pediatrician sent us to the radiology department at our local hospital to have the ultrasound. She was given a bottle of Pedialyte and they watched as it traveled down her esophagus, into her stomach, and then emptied out through her pylorus; indicating Charlotte didn’t have pyloric stenosis.
Two weeks later Charlotte’s jaundice finally cleared, but she still wasn’t able to have regular bowel movements and she continued to vomit. The doctor prescribed lactulose which lead to one bowel movement after the initial dose, then nothing. They repeated her ultrasound to test for pyloric stenosis and found gallstones. They also ordered blood work which indicated she had elevated liver enzymes. It finally started to feel like they were taking me seriously.
At eight weeks old they scheduled Charlotte for an upper GI at Cabell Huntington Hospital. The test showed large amounts of colonic stool, but no signs of congenital malrotation. At that point no medication was helping and I was stimulating her every other day to help her poop. I requested a GI referral for Cincinnati Children’s Hospital. They were completely booked for the next two months and said the soonest they could see Charlotte was in May.
The next week our pediatrician decided to do a barium enema to check for Hirschsprung's. The enema itself appeared normal but her 24 hour radiograph showed concern. The radiologist sent me straight to the doctors office where I was told “she’s just full of poop which we already know.” I got in my car after that appointment and started sobbing. I called my parents and told them how desperate I was, there was no way Charlotte could wait two months for a GI appointment. My dad encouraged me to call Cincinnati Children’s and explain the situation to them again.
I called immediately and after waiting on hold for what felt like an eternity, they said there had been a cancellation. Dr. Mukkada could see Charlotte two days later. At our initial appointment I brought all the films and tests she’d had done. During his examination Dr Mukkada found Charlotte had a heart murmur. He spent the next few weeks reviewing her history and previous tests, then came up with a plan. Dr Mukkada referred us to cardiology to rule out a heart defect and ordered a repeat upper GI due to lack of lateral view.
Both appointments were scheduled on the same day one month later. The cardiologist found Charlotte’s heart murmur to be an innocent “flow” murmur. But the second upper GI gave my baby her diagnosis, intestinal malrotation.
Cincinatti Children’s told us Charlotte’s malrotation had been missed on the first upper GI because the hospital that did it had not gotten a true lateral view. Without the lateral view they hadn’t seen Charlotte’s duodenal junction and therefore didn’t see anything wrong.
Since Charlotte didn’t have a volvulus she was not immediately rushed into surgery. We scheduled her Ladd’s procedure with Dr. Rymeski several days later. Typically in a Ladd’s procedure the appendix is removed, but due to concern for Hirschsprung's Dr. Rymeski decided it was best not to do an appendectomy. If Charlotte’s biopsy results showed she had Hirschsprung's in addition to malrotation, this would have allowed a future surgeon to repair her colon with the healthy tissue from her appendix instead of doing a “pull through” or an ostomy. Thankfully her biopsy results later came back negative for Hirschprung’s.
Six days after surgery, at exactly four months old, Charlotte was discharged from the hospital. She weighed over 10 pounds, was tolerating feeds and pooping on her own every day.
Two days after arriving home I noticed a big knot above one of Charlotte’s incision sites. She began vomiting again, so I brought her to see the pediatrician immediately. She had already lost half a pound and was dehydrated. Cincinnati Children’s admitted her for another six day hospital stay, but we weren’t able to identify the reason she got so sick so fast.
Charlotte is almost nine months old now. She has had a few episodes of inconsolability and bloody stools so her doctors were concerned she may have intussusception or intermittent volvulus. They were not able to see evidence on imaging and are now addressing the gallstones as a possible cause of the pain. Other than that Charlotte is growing so well. She has started to crawl and pull herself up to standing. I’m not sure what the future holds for my little malrotation warrior, but I know I won’t give up or stop fighting for her.
I had never heard of intestinal malrotation until Charlotte was diagnosed and the fact that our local hospital missed it for so long could have been dangerous. Not only do we need to raise awareness for malrotation to the general public, we need medical professionals to know what to look for too. I constantly ask myself if there was something I missed and why it took so long for them to figure out what was causing my baby such distress. I feel like she was let down by the people who were supposed to have helped her. I knew in my heart that something was wrong with Charlotte and we got where we are today because I never stopped questioning and pushing. I want other parents to know they should never second guess themselves.
If you would like to share your experience with intestinal malrotation, please send us an email for more information.