Why does this mom care how celebrities cure their hangovers?
What is short bowel syndrome and why is there a shortage of medication?
Melissa Harkey takes nothing for granted, especially the life of her little boy.
Six days after her high school graduation, Harkey found out she was pregnant. During her pregnancy she faced several complications due to the fact that her son’s intestines were located outside his belly, a condition known as gastroschisis.
Once Aiden Wayne Harkey-Ellis entered the world, Harkey got to hold her son. But only briefly before he was rushed to Cook Children’s Medical Center where Chip Uffman, M.D., performed surgery on Aiden.
Healthy babies are born with about 200 centimeters of the small intestine. Aiden now has 20 centimeters and only one-third of his colon. He has severe short bowel syndrome (SBS) and will always have trouble gaining weight and absorbing nutrients.
He has had 26 surgeries since birth, including two transverse enteroplasty procedures to lenghten his bowels and exploratory bowel surgery, a G-button where he receives feeding through a tube and several line placements.
“He is now home safe and sound, however we have been in and out of the very place that saved his life, Cook Children’s, and will be here for years to come,” Harkey said. “I was recently reminded, even if it seems like we’re not progressing, every breath is a miracle and progress.”
Short bowel syndrome occurs any time enough intestine is lost to cause poor absorption of nutrients. There are many causes of SBS. The most common cause in children is necrotizing enterocolitis, a rare complication of prematurity or other serious illness in the newborn period. Other causes include congenital intestinal anomalies (such as gastroschisis, malrotation or intestinal atresias), surgical resection for Crohn disease, trauma, malignancy, radiation, or vascular insufficiency, to name a few.
“SBS is a problem because affected individuals may not be able to absorb enough nutrition and water to grow and thrive,” said Danny Rafati, M.D., Ph.D., a gastroenterologist at Cook Children’s. “Also, because certain parts of the gastrointestinal tract perform unique roles, even losing relatively short segments can lead to a problem absorbing important nutrients.”
Individuals with SBS may need special formulas or even intravenous supplementation (often called TPN) to ensure they have enough nutrition and fluid to stay healthy and thrive. Due to these special needs some children require feeding tubes or long-term central venous lines.
And this is where Harkey becomes upset. She’s seen in the news lately where celebrities have been using the same IV nutrition that children with conditions like SBS need to survive for preventing hangovers or jet lag.
Beth Deen, a pharmacist at Cook Children’s, says that most of the components of the parenteral nutrition solutions have been on back order at some time in the past few years. One of most problematic has included intravenous calcium that premature neonates and cardiac infants cannot live without.
The reasons for shortages include a shutdown of a manufacturing plant due to contamination, which has stopped the production of important products.
When this happens, it creates shortages of needed medication.
Deen said the government and agencies such as the Food and Drug Administration have been involved in the past five years to help solve this problem, but it remains a day-to-day struggle.
“Judicious use of medications includes reserving it for those who truly need it,” Deen said. “We give these medications and vitamins we place in IVs to provide these kids with the nutrition that sustain them. To use them for any reason other than to help the patients in need are a waste of the materials needed to save lives.”