Petition for NEC Research and Awareness

Necrotizing Enterocolitis, also known as NEC. A Preemie Parents worse Nightmare.

On June 14, 2007 I gave birth to a beautiful little girl at 29 weeks 5 days. She came out crying with her eyes open. On June 20th something was severely wrong. All the milk from her feedings was sitting in her stomach and her stomach was extremely distended and swollen and loopy. She was diagnosed on June 23rd with NEC. Our little girl entered glory on July 7, 2007 at 23 days old.

Since her death I've learned of 2 babies who were in the same NICU and beds away from my princess who also contracted NEC. 1 Died, 1 now has Short Bowel Syndrome for life from the surgeries to remove dead tissue.

So why oh why are there no extensive studies being done? Where is the awareness? There is none, all of the mothers who've lost their children to NEC were told the same thing I was 'Don't worry, it's just one of those preemie things, it will be fine'

I am proposing that the periwinkle awareness ribbon be the official recognized ribbon for NEC awareness.

I also propose that there be funded research for NEC as well as awareness information put out there for everyone to see

Necrotizing enterocolitis (NEC) is a medical condition primarily seen in premature infants, where portions of the bowel undergo necrosis (tissue death).

Signs and symptoms

The condition is typically seen in premature infants, and the timing of its onset is generally inversely proportional to the gestational age of the baby at birth. i.e. the earlier a baby is born, the later signs of NEC are typically seen. Initial symptoms include feeding intolerance, increased gastric residuals, abdominal distension and bloody stools. Symptoms may progress rapidly to abdominal discoloration with intestinal perforation and peritonitis and systemic hypotension requiring intensive medical support.

Diagnosis

The diagnosis is usually suspected clinically but often requires the aid of diagnostic imaging modalities. Plain radiographs of the abdomen are useful by showing evidence of extraluminal gas i.e. Pneumatosis Intestinalis is pathognomonic (pneumatosis, portal venous gas or pneumoperitoneum) or an abnormal bowel gas pattern, particularly a persistently unaltered gas-filled dilated loop of bowel on serial radiographs (fixed loop). More recently ultrasonography has proven to be useful as it may detect signs and complications of NEC before they are evident on radiographs.

Treatment

Treatment consists primarily of supportive care including providing bowel rest by stopping enteral feeds, gastric decompression with intermittent suction, fluid repletion to correct electrolyte abnormalities and third space losses, parenteral nutrition, and prompt antibiotic therapy. Monitoring is clinical, although serial supine and left lateral decubitus abdominal roentgenograms should be performed every 6 hours. Signs of radiographic worsening of NEC include dilated bowel loops, pneumatosis intestinalis, portal venous gas, and pneumoperitoneum. Where the disease is not halted through medical treatment alone, or when the bowel perforates, immediate emergency surgery to resect the dead bowel is required. This may require a colostomy, which may be able to be reversed at a later time. Some children may suffer later as a result of short bowel syndrome if extensive portions of the bowel had to be removed.

Cause

NEC has no definitive known cause. An infectious agent has been suspected, as cluster outbreaks in neonatal intensive care units (NICUs) have been seen, but no common organism has been idenitfied. A combination of intestinal flora, inherent weakness in the neonatal immune system, alterations in mesenteric blood flow and milk feeding may be factors. NEC is almost never seen in infants before oral feedings are initiated.