Birth Defect Malrotation Awareness

Hi, I am here and Im sorry if Im on the wrong board but I am trying to bring awareness to intestinal malrotation. It occurs 1 in 500 babies yet the March of Dimes doesnt mention it as of now. My son had surgery for his at 10 weeks old and it was a nightmare. We found this condition by accident. Our ped thought it was reflux. Many babies die from this birth defect and their parents never even knew they had it. With surgery it can be corrected. There is a very small chance my son's intestines can twist. Please help me bring awareness so babies dont have to die!

14 Replies

  • In reply to Christi Mc:

    Thank you for sharing your story. My son was also born with malrotation of the intestines which was corrected with the LADD procedure after he was throwing up and couldn't stop. His presentation was classic while for others it wasn't. He is now 2 and a half and healthy just has lingering reflux from the procedure
  • In reply to Christi Mc:

    I came across this website because I was searching for Malrotation. I am 30 years old and I have 3 children. I had a Malrotation diagnosed at 13. I was at cheerleading camp. My symptoms were throwing up my food for three months. They did the LADD procedure, and I have been ok for 15 years. So, now at 30 I am having symptoms again. I went to the dr for lower abdominal pain. They did a CT scan which said I had a mobile malrotation and to seek a surgeon's opinion. I have visited 3 surgeon's and none of them know how to treat me me because this is a pediatric disease not adault and i already had the LADD procedure. Reguardless, your kids will be ok. I have had stomach issues but they are minimal. Your children were born differently and they will always have symptoms of stomach issues. They will grow up and become great people. My surgery is not life and death, but it needs to be done. My colon moves around and it can twist at some point. 

  • Im just finding this blog while searching on the internet. My daughter, at age 17 in 2013, found out she was born with malrotation only after going to a chiropractor to be "straightened" out before varsity cheer tryouts. We thought she had appendicitis but would have preferred that. She had the LADD procedure and all went well but she still struggles with eating and being sick to her stomach, sharp pains that she says feels like someone is stabbing her with a knife to the point that sometimes she has to stop moving. Someone told her recently she probably will not be able to have children. Does anyone on her know if that is true? That will crush her as she has a love for children and is currently going to college to be a pediatric nurse.
  • In reply to stacyat:

    Thank you for posting this thread!

    My son Eligh had malrotation and underwent surgery at 10 months.  He is now almost two and doing very well!  I was also very surprised at how common this congenital defect is!  He was lucky.  His symptoms were diagnosed as severe reflux and we actually had a wonderful radiologist accidentally catch it.  Before it became life threatening.

    Hugs and Love,


  • cherdon,

    I am so sorry to hear about your daughter and all that she has been thru in her life. As a mother myself I know that spending years watching your child suffer is agonizing. I also know that not being able to watch your child grow up literally rips you in two. That is my life, I will spend the rest of my life missing everything. I will never get the opportunity to see my daughter grow up, go to kindergarten or get married. She's gone forever. The mission of the March of Dimes is to make sure that no parent ever has to experience that pain ever again. That each and every child is born full term and healthy.

    When your child is suffering it is very difficult not to want to find the answer by any means necessary. After my daughter died I wanted to blame anyone and everyone including myself. So many of us on here are raising very ill children or are wishing that we were. The March of Dimes has helped us cope with our loss and deal with the day to day challenges of raising our children with special needs. Many of us owe our sanity to the March of Dimes. I have been in some very dark places and SHARE has helped pull me from them. We all sympathize with you more than you realize, I hope that you continue to update about your daughters condition and how she is feelings after surgery. I will pray that she begins to feel better and will find a doctor that can help her soon.

  • My son was born with duodenal malrotation that was found the day he was born. It was found because they were doing studies due to other birth defects he was born with. The March of Dimes has been a great source of support and information for me throughout my son's life. I agree that it is a serious condition but I also feel that the March of Dimes does take it seriously, they are 100% dedicated to helping all babies get their full 40 weeks and enter this world healthy!
  • The March of Dimes needs to take the Intestinal Malrotation very seriously. My daughter was not diagnosed until the age of 30. The last 2 and half years of been terribly hard. Try finding a surgeon that has done surgery on an adult with this condition. She had surgery, but she still suffers with pain, bloating and nausea, wondering when she should head to the ER. She carries a CD with a picture of her malrotation in case she is out of town and needs to get to an ER. Living with this condition as an adult is a very hard challenge. It is very unlikely she will ever have children, as it has been strongly recommended that she does not. Watching her suffer is very hard for me. Please March of Dimes, it is time to step up and spread the awareness out there. And you are the ones that can do this! Thank you.
  • Just wanted to share this resource on intestinal malrotation for other mommas. :)
  • Grace M, welcome to Share. Thank you for sharing your story with us. It's awesome that the day after surgery was her first smile, I agree with Lauren, I'm sure it was a "Thanks Mom" smile! The information on the MOD website is different, but here on Share we cater to our audience - as a fellow birth defect mom I'm so glad you have found this community!
  • Grace-

    Wow, thank you for sharing your daughter's story and bringing more attention to malroation. I had no idea. I love that she smiled at you after the surgery- a sure Thanks Mom for being so awesome!

  • My daughter was born in July of 2011 and when she was six weeks old she was diagnosed with malrotation. I believe that information on the symptoms and effects of this birth defect should be wider spread. No one I have spoken to ever heard of this. How I knew something was wrong: 1) Madeline would not take any formula 2) She hadn't had a wet diaper or bowel movement in 6 hours 3) She began vomiting a neon green color. ( Don't mean to be graphic!) I took her to the pediatrician and was sent immediately to the hospital where a surgeon was called in and surgery commenced 3 hours from the time of my arrival. THAT'S how serious malrotation is. The surgeon said that having the surgery immediately was going to save her life. If anyone knows of any malrotation awareness groups, I would love to hear of them. Obviously, this is a cause very close to my heart. PS - the day after Madeline's surgery was the first day I saw her smile :)
  • Hello and welcome to share! I'm glad your little one is doing better and pulled through the surgery. My cousin's son had this, and the intestines did flip again, so he had two surgeries and is doing fantastically now and is a thriving 4 year old little boy.

    Love and light to you and yours,
  • Hi and welcome to Share. My first son was born with malrotation, in addition to a few other unrelated birth defects. His was found during surgery to fix something else. I think the MOD doesn't mention it because there are simply too many birth defects to list every single one. I'm glad your son was able to have the surgery to fix it!
  • Hello and welcome to Share! I'm so sorry that your son has this condition. I'm glad to hear that he was able to have the surgery to correct it. How is he doing now? I look forward to reading more about your little guy!