Celebrate Gastroschisis Month with Jeanie and Her Gastroschisis Baby


The incidence of gastroschisis has doubled over the past 20 years.

Read “Jeanie’s Gastroschisis Baby” and learn from a brave, young first-time mom about discovery and how Gastroschisis can be reversed.

For purposes of this article, we will call this brave young mum Jeanie. Judging by the responses she has received, Jeanie met the goal of explaining gastroschisis to readers and proving that it can be entirely reversible.

Jeanie’s pregnancy began as a normal healthy event. This was her first pregnancy. But then the cracks began to appear. At the second trimester Jeanie was told the baby had gastroschisis. The doctor noticed ‘extra tissue’ on the ultrasound. The ‘tissue’ was the baby’s bowels.

Jeanie described her immediate reaction by saying that she is a God -fearing woman and she is determined to be strong and get through this.

But it seemed that there were more cracks appearing almost every day. Gastroschisis is usually detected through sonography. Jeanie and the baby’s father were referred to fetal medicine for monthly growth scans to check their son’s growth and confirm that his bowels were not dilated.

At 26 weeks the baby ‘s parents attended a brief consultation to learn more about the procedure that will follow. At about 33 weeks Jeanie was told that her baby’s stomach had moved out also.

This meant that his stomach and bowels were floating in amniotic fluid. In addition, Jeanie learned that she had contracted CMV virus while she was pregnant. It was conceivable that Jeanie passed the virus on to the baby.

This diagnosis was very daunting and changed everything. CMV is very dangerous to contract whilst in the womb and can lead to deafness, blindness, heart and brain problems.

The 36th Week

At 36 weeks Jeanie thought her water broke. She took herself to the hospital only to be turned away and sent home being told it was ‘just fluid.” Fortunately she was scheduled to see the midwife the following day who confirmed that the water had in fact broken and additionally the baby had a bowel movement. Jeanie needed to be induced as without cover she and the baby were in a very dangerous situation.

Time to Go Home?

It was a rough pregnancy and Jeanie wanted to take her baby and go home. Apparently, that was not going to happen immediately. She gave birth vaginally without painkillers and was able to hold her baby almost immediately.

Jeanie held up as well as possible during the entire pregnancy but was not prepared to see her baby hooked up with wires in an incubator. But again, she held strong and saw progress every day. Her baby’s bowels were put into a silo and advanced a little each day. Within five days the closure was performed. Then the parents had to wait for their baby to have a bowel movement, proving that the bowels were functioning. It took eight days. Feeding was introduced slowly and increased each day as long as he was able to tolerate the increase.

The parents and their baby came home within five weeks with no further complications. He is breastfeeding well and gaining weight. There is no indication of CMV even after requisite scans. He can be judged as perfectly healthy.

Jeanie wants readers to know that the NICU stay may seem as if it is never ending but she feels the best advice she can give is to stay positive, pray, and try to spend as much time with the baby as you can. She admits that the most difficult test for her was not being able to care for her own baby. It took a while but eventually the nurses allowed her to look after the baby and feed him, keeping her from feeling helpless.

Jeanie encourages readers to ask questions but reminds everyone that gastroschisis is not a permanent condition. It is a birth defect that is easily resolved due to advance medical techniques. It is not a life sentence.

Find an event near you! This year on July 30th, Gastroschisis Awareness Day, The Global Gastroschisis Foundation will celebrate its 14-year anniversary. Over the years, the foundation has been working hard towards its goal of Awareness, Research, and Support.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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