How our baby got Short Bowel Syndrome?

Sharing how our daughter got short bowel syndrome. Hope this can help someone out there. If you have any questions don't hesitate to ask. Also, feel free to share how your love one got short bowel syndrome we would love to hear your story too. Wishing all good health.

[@BeckaMaecie]

Your videos have helped me so much! My son was born with gastroschisis. Had an atresia at the end of the large intestine and had an ounce removed, and the end of what was left brought into an ostomy. As his colon and anus were underdeveloped, the size of a coffee stirrer at birth, the surgeon said. Hoping to be reconnected before hes a year old. But your videos have helped me so much with applying his bag!!

[@Naomi-ol3vb]

I wish so badly that they would have been able to find my daughter's defect. I had constant ultrasounds from about 16 weeks on due to placenta previa. I had a very difficult pregnancy and went into labor 8 weeks early. They delayed my labor for a week to give her a better chance and give steroids to mature her lungs. I went into full labor at 33 weeks and she was born 7 weeks early on May 25, 2005. Our biggest concerns were that the placenta tore, causing blood loss for us both, and she got stuck and had to use forceps since she was breathing fluid. She seemed fine other than needing two blood transfusions in the first 24 hours. They held off on feeding until she had a bowel movement, which didn't happen so they ran tests. I was told she had a blockage in her small intestine and needed immediate transfer to Riley Children's hospital in Indianapolis, Indiana for surgery. Over 14 hours in surgery and they told us she had a blockage and the rest had not properly formed. After surgery she was left with 10 centimeters of small intestine instead of the 200 centimeters she should have had. She needed a multi visceral transplant (liver, stomach, pancreas, and small intestine) in order for her to survive beyond a year old. Months in and out of the hospital, surgeries, appointments and I was watching my baby girl slip away. She relied on TPN for most of her nutrients and it damaged her liver. By the time we got to the top of the transplant list, she was to sick to survive surgery. She stopped clotting and had a massive brain hemorrhage that squashed her brain stem. She was 8 1/2 months old and I had to make the decision to end life support....my baby took her last breath Feb 12, 2006 in my arms. I had so many ultrasounds during my pregnancy including a week before I had her and ones at the hospital. How did my doctor not know that something was wrong? The surgeon that did my daughter's surgery asked if I had ever been told that I had polyhydramnios, or excess amniotic fluid. I hadn't but thought my belly seemed bigger than it should have been. My water broke early that day, but they still had to use that hook thing to drain the other pockets of fluid. That right there is a sign that I did have that condition and that something was wrong with my baby in utero!! Sorry about my rant, just breaks my heart thinking they could have done more and I'd still have my beautiful baby girl.

[@Ourgutfeeling]

Oh my gosh!! I am so sorry. I have found that many drs don’t understand this condition and some don’t detect it at all. Big hugs to you momma! May you find peace 🙏🫶

[@teresalove1436]

Bless!

[@rosemariegalap7087]

Just watch your video..im researching about this nec. Hi problem.. Cos i have a baby now which small preterm baby in NICU.. She have a surgery ostomy.. Too worried every day... Keep on praying for her safe..

[@Ourgutfeeling]

Rosemarie Galap I am so sorry momma. Is your baby short gut too?. If so, There is a Facebook group called Short Gut syndrome families support group you can find a lot of help there too. Just know these babies are very strong. My daughter is now thriving and off tpn. Things will get better momma. Big hugs!!!