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Gastroschisis Awareness - Ember's Journey

Gastroschisis Awareness - Ember's Journey

10% of purchases made will be donated to Gastroschisis Awareness - Ember's Journey Learn more

About this cause:

I would like to help fundraise for the hospitals that take care of Gastroschisis issues. I learned of this defect June 2012. Whenever I had my gender reveal ultrasound - I found out that I was having a girl, and that I had an "abnormal ultrasound." They advised me of gastroschisis and transferred me to an SSM hospital and set me up with doctors from Cardinal Glennon (surgeons for my daughter's procedures.)

I gave birth to Ember at one hospital... within 15 minutes of her birth, she was placed in something like an incubator - I didn't get to hold her, I could only touch her fingers... After I got to meet her, they rushed her away to surgery. I didn't get to see her until that next evening... It took her 9 days to go to the bathroom since her intestines were "slow." She didn't get to drink her first bottle until she was 3 weeks old. After that, they started feeding her more and more. Once her body was used to it and she was reacting properly, she was discharged. They told me they were pretty well "experimenting" with my daughter, and two other patients to find the best way to take care of the defect after surgery... However, at this time, my daughter Ember is FABULOUS and totally normal. They say gastro babies stay in the hospital from 4-6 weeks. Ember was released within 3 and I'm hoping her procedure can be used for future cases.

What is gastroschisis? Gastroschisis is a birth defect of the abdominal (belly) wall. The baby’s intestines stick outside of the baby’s body, through a hole beside the belly button. The hole can be small or large and sometimes other organs, such as the stomach and liver, can also stick outside of the baby’s body. Gastroschisis occurs early during pregnancy when the muscles that make up the baby’s abdominal wall do not form correctly. A hole occurs which allows the intestines and other organs to extend outside of the body, usually to the right side of belly button. Because the intestines are not covered in a protective sac and are exposed to the amniotic fluid, the bowel can become irritated, causing it to shorten, twist, or swell. Soon after the baby is born, surgery will be needed to place the abdominal organs inside the baby's body and repair the abdominal wall. Even after the repair, infants with gastroschisis can have problems with feeding, digestion of food, and absorption of nutrients. The Centers for Disease Control and Prevention (CDC) estimates that about 1,871 babies are born each year in the United States with gastroschisis. Source: http://www.cdc.gov/ncbddd/birthdefects/gastroschisis.html.

I would like to donate to this cause because doctors and surgeons are still trying to find a way to take care of this the best way. Even after surgery for the infants, it takes weeks for them to be discharged and back to 100%. I would also like to help in finding the causes of gastro - solid causes. Without proper prenatal care - this can be a very dangerous and life-threatening condition. Thanks to the technology today, there is a 90% survival rate for this defect. Please help raise awareness and funds for this cause!