Baby Klive was born with Gastroschisis – is a birth defect of the abdominal wall. Klive’s intestines were on the outside of the baby’s body, exiting through a hole beside the belly button.Typically a surgery is performed to put the bowels back into the abdomen and then close the defect. However, in Klive’s case, the bowel was too swollen and didn’t all fit inside his abdominal cavity. Klive’s intestine would be kept in a plastic bag called a silo until he grew a bit bigger and they’d fit. So at two months old, Dr. Paul Beaudry performed a surgery to place the bowel back inside. Unfortunately, the bowel had perforated and became diseased. Klive’s next challenge was a serious condition called serious condition called necrotizing enterocolitis, or NEC. This condition makes the tissues of the large or small intestine become inflamed and at risk for low blood flow, which can cause part of the intestine to die. In order to save Klive, Dr. Beaudry had to remove the diseased portion of bowel. Because the bowel is vital to Klive being able to absorb nutrients, Dr. Beaudry had to try and save as much bowel as possible without leaving any diseased bowel behind. In fact, in an attempt to not take too much bowel, a portion of it did become diseased and Dr. Beaudry had to take Klive back into surgery so he could take more. In the end, Klive was left with only 32” of bowel – a third of what he should have. Klive has never been home. He is still inpatient at the ACH because he is not able to absorb enough nutrients through his remaining bowel. His team in the CHIRP clinic are working with him to slowly introduce milk to his system – so his bowel can get used to it and start working properly. His main source of nourishment is a nutrient-rich cocktail he gets through an IV called TPN. He also has a g-tube that he gets his tiny amounts of milk through.
Klive’s parents Tom and Kim know while they are desperate to go home and be a “normal family” they know they are in the very best place. With Dr. Beaudry and the CHIRP team, they feel they have the best of the best looking after their son. Their older son Dom loves the ACH – and thanks to the volunteers who take him to the playroom each day – and the staff at Emily’s Backyard – Dom thinks the hospital is just great! He feels so special and will probably be mad when he has to leave the hospital.
Klive could absolutely have benefitted from the Infrared Perfusion Camera. While the camera perhaps wouldn’t have saved more bowel…it might have helped inform Dr. Beaudry’s surgical decision and saved Klive from having to have addition operations.
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