Teen Still Deals With NEC Issues After Drinking Formula as a Baby Sixteen Years Ago

At first glance, Addison seems like a normal teenage girl. She’s cheerful and all smiles. But underneath her happy demeanor, she’s still dealing with the complications of necrotizing enterocolitis (NEC), a gastrointestinal condition that primarily impacts preterm infants.

“Sometimes, I’m just like, I wish I really wasn’t sick because it sucks,” Addison said as she sat next to her mom, Cassidy. “I’m worrying all the time, and everybody else is just living their lives and not having to worry about what medicine they have to take or get a shot every week in the leg.”

NEC causes inflammation that can lead to tissue death in the intestines. It’s fatal in up to 50% of cases, with serious cases leading to nearly 100% mortality.

Studies have linked the disease to cow’s milk baby formula, especially in premature babies. One of the earliest studies published in 1990 found that NEC was up to 10 times more common in preterm infants fed formula only. It was three times more common in babies who received formula and breast milk.

Addison and Cassidy hope to hold baby formula manufacturers accountable for failing to warn them about the risk of NEC. They sat down for an interview with Drugwatch to share their story, hoping to help others. Cassidy and Addison are using alternate names to protect their privacy.

It has been a long journey for Addison and Cassidy. Addison was born premature and developed NEC when she was just a baby, a condition that no one explained to Cassidy. A doctor has since told Cassidy that it was from Addison receiving Enfamil and other cow’s milk formulas in the NICU.

The teen pointed to a set of thick scars on her neck and collarbone area. They are from IVs doctors inserted as she fought for her life in the NICU because of NEC.

Addison revealed that her stomach has a variety of scars from all the surgeries she had as an infant. They are thick and crisscross her belly from one side to the other. Doctors performed surgery to remove all the dead tissue in her bowel to save her life. The surgical incisions later led to her developing hernias that required more surgery.

“I don’t have a belly button,” shared Addison.

Addison’s scars reminded Cassidy of how close she came to losing her daughter, who was just over one pound when she was born at 28 weeks. Cassidy had lost her first baby. When she became pregnant again, and her unborn daughter faced a similar fate, Cassidy was worried.

Cassidy was emotional, and her voice cracked as she said, “It started to make Addison sick as well. So, my doctor … she was like, ‘Cassidy, it’s going to be a 50-50 shot of delivering Addison, and there might be a possibility she might not live.’ But I was like, let’s just go ahead and get her out of my stomach because I wanted to give her a chance.”

Addison has been fighting courageously ever since. Cassidy recalled when she realized something was wrong.

After Addison was born, Cassidy said doctors noticed Addison’s stomach was swelling.

“After about three weeks of being born, [doctors] noticed her stomach started to swell, and it just kept getting bigger and bigger. She looked like she was pregnant. I mean, her stomach was huge,” Cassidy said.

Doctors inserted tubes in Addison’s stomach, trying to drain it. However, her stomach kept swelling. The entire time, she was still receiving baby formula through tubes in her nose.

“Then they did another surgery, and they cut her open. It was called an exploratory surgery. From side to side, basically,” Cassidy said.

When they went in, doctors found the tissue on the right side of Addison’s colon was dead. Most of her intestinal tissue was dead. So, she also had small bowel syndrome. She had to use a colostomy bag to use the bathroom.

During that surgery, Cassidy remembers sitting in the waiting room. Initially, she thought her doctor was going to tell her that Addison didn’t make it.

“I was so scared. But [the doctor] told me all of what was going on with Addison. And I was just like, ‘My baby is still alive. She’s going to be okay.’”

Addison was able to go home after several months in the NICU, but she has digestive complications that she continues to live with. She shared that she wishes she could swap out her stomach and esophagus for new ones.

Among her diagnoses, Addison lives with eosinophilic esophagitis (EoE). The condition causes inflammation in the esophagus that can lead to difficulty swallowing. She also has gastrointestinal reflux disease (GERD), a condition where stomach contents go back up the esophagus.

“[EoE is] caused by all the acid in my stomach, and I have GERD, so it’s like it goes all up in my throat and it makes it swell. And so it’ll close up, and I can’t eat and drink. Yeah, I throw up my food a lot,” Addison said.

The family dog, Sparkles, jumped into Addison’s lap as the teen shared that she had three treatment options for EoE, and “they all suck, to be honest.”

“One of them is the diet. It’s called the six-food-something diet, and you can’t eat like nothing at all … so we haven’t tried that one yet because I’m a 16-year-old girl, and I be eating,” Addison said with a good-natured laugh.

The second option is using an inhaler, and she has a hard time using it. That one is “low-key difficult [and] kind of hard,” according to Addison.

The third treatment option is to inject an eczema shot called Dupixent into her leg every week. According to Cassidy, the shot saved Addison’s life because she was so dehydrated from not being able to drink or eat. However, having to give herself a painful shot every week gave Addison severe anxiety, so she stopped.

“It’s the third week without my shot, and I’m doing good. I haven’t been sickly. I’ve been eating and stuff. It’s because I’m in remission, but it’s going to come back, obviously, and it’s never going to go away. And that is crazy to think about,” Addison said.

Cassidy shared several medical record screenshots on her phone of all the conditions Addison has been diagnosed with because of NEC. In addition to the emotional and physical complications of NEC, years of surgery, prescriptions and doctor’s visits have left Cassidy financially devastated.

“Who could work whenever you’re going to the doctor all the time?” said Cassidy, who was also caring for her disabled mother at the same time she was trying to care for Addison.

She added, “Every day I call [Addison], and I ask her, ‘Are you feeling okay, honey? Is anything wrong? Nauseous? How do you feel?’”

Cassidy shared that she and Addison recently lost their home because of their financial struggles. They live apart, which breaks Cassidy’s heart. She said she is working hard to get them back together.

Addison tries to be brave and cheerful, but it also wears on her. Nevertheless, they both look ahead to better days.

“I’m sorry because it hurts, and it sucks. Sometimes it can make you really sad, but you can get through this because it gets easier. Every day it gets a little easier,” Addison said in a message to other kids having to deal with NEC complications. “You gotta do it every day. That’s the hard part. But it does get easier.”

For the parents who must watch their kids go through these hardships because of NEC, Cassidy offered words of comfort.

“Just stay strong. It’s going to be okay,” she said. “It’ll be okay.”