Latasha Rollins can pinpoint the moment she knew something was wrong with her daughter Maddisyn.
The first five days of Maddisyn’s life had gone well enough. She was born at 31 weeks; premature, but her condition was manageable with a combination of total parenteral nutrition (TPN) — a special formula administered through a vein — and donor breast milk helping her development. Maddisyn appeared healthy, and was already a very expressive baby.
It was this strong personality that led Latasha to believe something was wrong on the sixth day, when she visited the NICU and noticed Maddisyn was crying. “It was not how she cried previously. She was crying really badly and her eyes look scared like I hadn’t seen before,” she said.
Latasha, drawing from her past experience as a nurse, instinctually pressed the button for help. The attending nurse opened Maddisyn’s feeding tube and a green fluid was released, suggesting that her intestines were not working properly.
Maddisyn’s condition worsened on the next day. Caregivers began to perform tests and x-rays during the course of the week. The nurses began to speculate that she had necrotizing enterocolitis (NEC) - a serious gastrointestinal problem that mostly affects premature babies.
Maddisyn’s case was unusual in that NEC typically develops in babies born more prematurely (25 or 27 weeks gestation) and usually beyond the first two weeks of life. Her problem, however, was typical of NEC in how the symptoms and severity worsened rapidly. It became clear that Maddisyn was in serious condition and the surgery team would have to be brought in to assess the situation.
“Initially, it wasn’t entirely clear what was making her sick,” said Gloria Pryhuber, M.D., professor in the Division of Neonatology. “She went from breathing well on her own and eating, to requiring high-frequency ventilation and intubation, as well as medicine to support blood pressure and treat the poor flow of blood running through her body.”
Holding on to Hope
Because she was so small and young, the Operating Room and its staff came to Maddisyn’s bedside on her ninth day of life. With their first look into her opened belly, the severity of the situation became clear.
“She appeared to have a lot of dead bowel, to the point where if we removed all the bowel that looked dead, we’d have nothing left for survival,” said Pryhuber.
In fact, the surgeons were careful not to remove everything that looked dead because it could potentially be fatal. This meant that Maddisyn would be more stable but would remain sick and at risk of infection, inflammation, etc. At a minimum, a second surgery would be needed — soon — to thoroughly remove all of the dead bowel and carefully keep any bowel that might recover, and then determine how much of her GI system could still function.
Derek Wakeman, M.D., pediatric surgeon, was asked to consult on the situation and perform the second surgery. After examining the results of the first surgery, the next day Wakeman and Pryhuber sat down with Latasha, as well as Maddisyn’s father Matt, and were honest: Maddisyn’s prospects were bleak. Without surgery, she would die, but even a successful surgery could produce long-term hardship.
“It’s one of the most difficult decisions we make as surgeons with families,” said Wakeman, “it’s easy to say ‘remove everything and the child will likely survive,’ but the prospect is that your child could spend their entire lives in a hospital, dependent on nutrition by vein or TPN, with constant risk of central line infections.”
This scenario did not rest easy on Latasha. “There was doubt. I was really scared, and they made it sound dire,” she said. “I asked myself: ‘what would her quality of life be? What am I going to put this baby through?’ I felt like I had to make a decision to let my baby die.”
During the course of the night, however, something came over Latasha. A mother of five, and grandmother of one (she had her second grandchild this spring), Latasha had Maddisyn at age 46, and it began to feel like fate: “I figured I must have had her at that age for a reason,” she said.
She ultimately decided to go forward with the surgery. “She could have a tough life, but a lot of people have a tough life. I decided I would let the doctors do what they could and I would do whatever I could.”
“Latasha’s determination was fierce, you could see in her eyes that she wanted to fight for Maddisyn, and it helped that she was a nurse and understood the information I was giving her,” said Wakeman. “We decided to go on that journey.”
Darkness Before the Dawn
Wakeman began the surgery the next day, on Sunday night. Whatever optimism that might have existed before the surgery quickly dissipated when he got a closer look. Almost all of Maddisyn’s small intestine was dead.
“Part of the way through, we weren’t sure she was going to make it, and that we might have to stop the surgery,” said Pryhuber.
Wakeman even paused the surgery mid-way to inform the family fully about the findings; Latasha was steadfast in continuing to try to save Maddisyn. Wakeman removed all of the dead bowel, and found some silver lining: a tiny section of her small intestine was still intact, as well as her colon. Most critically, her ileocecal valve — a sphincter that connects the small intestine to the colon — was still functional. Another surgery would be needed seven weeks later to try to connect her intestines and colon together. These seven weeks would also provide critical time for her remaining small intestine to grow, which would increase her chances of having a functional GI system.
Thanks to the support of her family and caregivers, Maddisyn recovered incredibly well after the initial operation, and her sepsis resolved. The next surgery would determine her chances of surviving without TPN or nutrition by vein, particularly through connecting her colon to the small intestine.
“The colon is involved with water and electrolyte absorption. It would be very difficult for Maddisyn’s body to meet her nutrient and fluid needs without connecting it,” said Megan Gabel, M.D., associate professor in the Division of Pediatric Gastroenterology, Hepatology and Nutrition.
After seven weeks, Maddisyn went back into surgery. Wakeman worked to salvage and connect what he could. It was a success. “We were able to save that little piece of bowel. For her, that was the difference between 25 and 27 cm of small intestine,” said Wakeman. “Every bowel connection and centimeter is important with a child is as young as Maddisyn.”
The surgeons also successfully connected the intestine to the ileocecal valve on the colon. “If we didn’t make all those connections, we would only have 17 cm total. Even with more than 27 cm, Maddisyn would still be on the borderline of whether she would be able to get off nutrition by vein,” said Wakeman.
While Maddisyn still had a long way to go for full recovery, her prospects were looking significantly better than when the doctors initially operated on her.
“I was still really scared after her surgery, but what made me feel ok was when Dr. Wakeman told me that her large intestines were well and he was able to save some of her small bowel,”
Eating on her Own – for the First Time
After the surgery, Maddisyn had a central line installed. This would be a critical time for her health and would require vigilance from her family to prevent infections, monitor progress, and keep her out of the hospital.
“Patients with catheters or central lines have a high risk of blood stream infection and sepsis, and it’s a frequent cause of re-hospitalization,” said Gabel.
Gabel kept in close contact - touching base with Latasha weekly – to see how Maddisyn and her feeding process was going and adjust accordingly. This collaboration allowed both Gabel and the family to implement changes on the fly that kept her safe. After the first couple of months, Maddisyn hadn’t experienced any complications – a major success.
“Due to amazing vigilance on the part of her family, she has never had a bloodstream infection, which is exceptional at 7 months of age. Her parents have been pivotal team members and wonderful advocates for Maddie,” said Gabel.
While Gabel and the family are cautiously optimistic, Maddisyn continues to make steady progress. During those seven months, Maddisyn started to advance to feeding through her Gtube with very small amounts orally, which she took well. Her care team took steps to control her oral feeding with slow, continuous nutrition to help her intestines to adapt and prevent overloading her system.
In late February, Maddisyn hit a major milestone: her intravenous nutrition was stopped and she now takes all feeding orally. She is transitioning to a normal diet, albeit with less sugar or fat and a focus toward having more frequent, smaller meals. While she’ll need lifelong GI follow-up to make sure that her vitamin and mineral absorption are ok, it’s a stunning turnaround from where she was that fateful weekend, when neither her family — nor her caregivers — were sure if survival were an option.
And regardless of what happens in the future, Maddisyn won’t hesitate to let everyone know.
“Maddisyn’s tenacity has served her well,” said Gabel. “She’s been outspoken since her NICU days. If something isn’t right, she will make us aware!”