image by: The Global Gastroschisis Foundation

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Gastroschisis: A Rare Disease with No Roadmaps

Expect anything. Outcomes cannot be promised. This defect is not an "easy fix" no matter what you get handed. You never get to “leave it behind,” you’ll watch every poop, fever and vomit with caution, and with good reason. Don’t consult Dr. Facebook, know where your knowledgeable physician is, find that person and build that relationship. Ask questions. If you have to, ask the same question over and over.

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Previously Featured

The Case of the Inside-Out Baby

Doctors treat gastroschisis by trying to push the baby’s organs back into its body. This doesn’t have to be done immediately after birth, and in some cases the job gets easier the longer you wait.

'Natural Isn’t Always Perfect, and Perfect Isn’t Always Natural'

Gastroschisis is a serious birth defect wherein the baby's intestines protrude from the inside of the abdomen to the outside, pushing through a hole in the abdominal wall.

Cases of Gastroschisis, a Birth Defect, on the Rise in the US

Health officials are not sure what causes gastroschisis, though the CDC suggests that it might be triggered by genetic factors — either independently or in combination with other influences like environmental conditions that the mother is exposed to, or food, drink or medicines she ingests while pregnant.

Gastroschisis Vs Omphalocele (Exomphalos)

Gastroschisis and Omphalocele are congenital defects of the abdominal wall that are surgically treated in a very similar way.

Gastroschisis: A State-of-the-Art Review

Gastroschisis, the most common type of abdominal wall defect, has seen a steady increase in its prevalence over the past several decades. It is identified, both prenatally and postnatally, by the location of the defect, most often to the right of a normally-inserted umbilical cord. It disproportionately affects young mothers, and appears to be associated with environmental factors.

Gastroschisis: one year outcomes from national cohort study

Infants with complex gastroschisis are significantly more likely to develop intestinal failure and liver disease associated with intestinal failure compared with infants with simple gastroschisis. They also take twice as long to achieve full enteral feeding (47 versus 24 days, respectively). In addition, infants with complex gastroschisis are more likely to require an unplanned reoperation and a prolonged stay in hospital.

Gastroschisis: the cost of an epidemic

The incidence of gastroschisis has risen 3-fold in 10 years. The median cost per patient is relatively constant. A few patients with severe intestinal dysmotility require prolonged hospital stay. As the condition becomes more common, there are an increasing number of complex patients and thus an increase in annual costs, which is disproportionate to the increase in numbers of cases.

Katie and Jaylen battle gastroschisis: ‘I just want him to live a normal life’

The story of Katie and Jaylen is a heart-rending one of a single mum caring for her young son, born with a hole in his abdominal wall. Photographer Morganna Magee met Katie in 2011. Then 20 years old, she was a single mother to Jaylen, a boy who was born with gastroschisis, a birth defect that results in a hole in a foetus's abdominal wall. He spent the first 19 months of his life in hospital and connected to a machine that fed him directly into his stomach for 17 hours a day. Now four years old, Jaylen is not yet able to live permanently at home. Katie struggles to work and study. Her days are filled with appointments and the administration of Jaylen's medical care.

Resources

The Global Gastroschisis Foundation

Created to support gastroschisis research, awareness and support for patients and families affected by gastroschisis.

CDC

Gastroschisis is a birth defect where a hole in the abdominal (belly) wall beside the belly button allows the baby’s intestines to extend outside of the baby’s body. The hole can be small or large and sometimes other organs, such as the stomach and liver, can be found outside of the baby’s body as well.

NORD

Gastroschisis can be diagnosed by prenatal ultrasound or upon birth. It is differentiated from omphalocele by the presence of freely floating abdominal organs in the amniotic cavity without a membranous covering. The organs appearing on the outer surface of the abdomen, after delivery, confirms the diagnosis.

StatPearls

Gastroschisis is a paraumbilical, full-thickness abdominal wall defect associated with protrusion of the bowel through the defect. It is rarely associated with genetic conditions.