Intestinal Malrotation Foundation
Spreading Awareness and Offering Resources to Families Dealing with Intestinal Malrotation

Stories

Intestinal Malrotation Stories

Mya's Intestinal Malrotation Story

IMFMya3.jpg

Mya was born January 15th at 37 weeks and one day by cesarean section. She was so tiny and beautiful, I loved everything about her.

Mya had difficulty feeding right away. She seemed to want to eat, but always gagged and spit her food back up afterwards. I was worried something was seriously wrong, but the doctors in the hospital said it was just reflux. Mya couldn’t be discharged until she was able to eat two ounces of formula in a 30 minute time frame. We worked hard to encourage her to eat. I made sure I was there to help with every feeding that I could. After three long weeks in the hospital she was finally able to go home.

Mya’s older brother and sister fell in love with her immediately. When they first met Mya, her older sister held her first, then handed her to her brother. He proudly stared at Mya and said “My baby Mommy!” They were both so gentle with her.

After we arrived home, I worried every second of every day about Mya. I never let her out of my sight. She napped in her bed right next to me. She started to eat a bit better but still suffered from the same “reflux” she had in the hospital. She continued to spit up large amounts at a time, sometimes her spit up was so forceful it would shoot across the room. In my gut something didn't seem right, but I couldn’t figure out what it was.

IMFMya4.jpg

On Mya’s fourth day home she had three blowout diapers in the morning which seemed unusual for her. That evening when I tried to feed her she refused to eat. We figured she was experiencing normal baby colic, and spent the evening holding and comforting her.

The next morning we woke up to a parent’s worst nightmare.

I looked over at Mya in her crib and my heart broke into a million pieces. She had yellow vomit all over her bedding and her face. Her abdomen was so swollen you could see the veins. She felt cold and her cry sounded so soft. In that moment I knew my gut had been right all along, something was really wrong. I looked at Mya's dad and told him I felt like we were going to lose our baby girl.

I called Mya’s doctor who said to go straight to the children’s hospital an hour away. I was afraid Mya would vomit and choke in the car, so I brought her to the smaller hospital in town where EMS could transport her. I was terrified during the ambulance ride. Mya’s temperature continued to drop and she vomited yellow bile six more times in the 45 minutes it took for us to arrive.

When we arrived at the children’s hospital they diagnosed Mya with intestinal malrotation and volvulus. The surgeon lead us to believe that after her Ladd’s procedure everything was going to be great and she would come out just fine. Somehow, I knew otherwise.

While Mya was in the operating room all I could do was pray. When the surgeon finally came out to talk to us a few hours later he said that Mya had a 360 degree volvulus. They untwisted it, but the blood supply had been compromised for so long that part of Mya’s bowel looked like it was dying. They hoped with the volvulus untwisted and blood supply restored, some of her bowel would pink back up. A “second look” surgery was scheduled for two days later to check her bowel's viability. They planned to sedate Mya until both surgeries had been completed.

IMFMya2.jpg

After the necrotic tissue was removed during Mya’s second look surgery, she was left with 20% of her original bowel. The surgeon said that although she had lost a lot, there was enough left to work with in an intestinal rehab program.

It was finally time to wean Mya off the sedation she’d been under for two days. They began to lower Mya’s sedation and pain medication, but she didn’t show any response. Further tests revealed that Mya was brain dead. She had suffered a massive ischemic stroke sometime between her first and second surgery. No one had noticed until they tried to wake her up.

As they took Mya off life support I was overwhelmed with guilt, sadness, anger, love and uncertainty. I kept thinking that this moment was not something a mother should ever have to experience. I sang Jesus Loves the Little Children to her as I held her and kissed her forehead. I didn’t want to let go.

Mya’s funeral was hard. I managed to find enough courage to thank everyone for coming, but that was all I could say. The hospital had given us a thumb drive with Mya’s heartbeat on it. We decided to play the thumbdrive in unison with the song You Are My Sunshine. As people said their final goodbyes they were able to hear Mya’s heartbeat one last time.

Coping with my grief is by far the hardest thing I have ever tried to do. I miss Mya like crazy and wish I could see her sweet face one more time. Some days I kick myself for not knowing the warning signs of malrotation and volvulus, it all happened so fast.

IMFMya6.jpg

Raising awareness and helping to educate others is one of the few things that keep me going. I am striving for more education in hospitals on the key signs of intestinal malrotation and volvulus such as green or yellow bile vomit, feeding difficulties, failure to thrive, abdominal distention or intermittent pain. Mya’s passing will not be in vain. I will not stop until every parent and doctor is educated on intestinal malrotation.

 

If you would like to share your experience with intestinal malrotation, please send us an email for more information.