Our NICU and ICU experience at Children's with Gastroschisis

By Jessica
Saint Stephen, MN

When my Doctor told me that "James" (my unborn baby) had Gastroschisis, we were frightened - not knowing how, why, or what Gastroschisis was in the first place. We were told that James would be born with a hole in his abdomen and a portion of his small intestine outside of his body.

James had his share of complications throughout the rest of his time in utero - between low levels of amniotic fluid and decreased or no fetal moments. James was born at 36 weeks and 4 days; he was 5 pounds 9 ounces. Pretty much considered a full-term baby, and he was exceptionally big.

Right after labor and delivery James was rushed to a team of nurses for an array of tubes, IVs and a wet wrap - so that the portion of small intestine that was outside of his body would stay moist, functioning, and free from infection. The nurses whisked him off to his first batch of surgeries. We always reminded ourselves that it could have been a lot worse.

His first surgery at Children's was to insert a Broviac tube in through his chest to his stomach for feeding. Then a tube down his nose to drain the bile that lay in his stomach - that tube became very important to us. He needed that tube to clear his stomach until his body was through healing. James' body wasn't allowing the bile to transfer from his stomach into his intestines. The second surgery was to repair his abdomen. The doctors did a great job to repair the hole that nature had created. With his abdomen repaired and all of the surgeries over, for the time being, it became a waiting game.

James was transferred to the NICU of Children's directly from his surgeries. The nurses and doctors were unbelievably genuine and caring. In that first week and a half we learned a lot - especially to be grateful for what you have. It was hard to see our baby in a warmer in the NICU; while on morphine and a respirator as well as a mass of wires and tubes. He did so well in the NICU in the first week and a half that he was well enough to be transferred to the ICU.

While in the ICU and improving daily, he suddenly came down with a fever and was not himself. The doctors and nurses were great at finding the cause of his fever. They found out that the pressure in his abdomen caused by the repairing of his Gastroschisis had caused his abdomen to herniate into his scrotum. So that night James underwent his third surgery at not even a month old.

The surgeons repaired the herniation beautifully and he slowly became himself again. The days passed quickly with the help of all of the staff at the hospital and their care for not only the children but also the families. Two weeks later, after a long month of roller-coastering, James was drinking 80cc of milk and maintaining all vital signs. The doctor gave us clearance. We could finally bring him HOME. He wouldn't have any more wires, tubes, IVs and monitors. It was a monumental day, a day of freedom.

Now James is three and full of energy and curiosity like any three year old. Besides his scars you would never know that he had any troubles trying to come into this world. There are no projected long-term effects of Gastroschisis that we know of, but we will always be indebted to Children's Hospital for their work. If not for their knowledge we may not have my son to hug and kiss goodnight.