Trust your instincts

Mother’s persistence helps save her baby’s life 

Maybe it was mother’s intuition, her experience as a nurse, or her own mother’s advice to “trust your instincts.”

Whatever the reasons, Kimberly Andon of East Moline, Ill., knew, deep down, that something was wrong with her newborn baby, Blakeley.

“Nobody would believe me,” she says. “I’m a worrier so people didn’t take me seriously.”

Indeed, Blakeley appeared normal at the time of her birth on May 24, 2013, at Genesis Medical Center in Silvis, Ill. Of potential concern was the remote chance that Blakeley could have been born with Hirschsprung’s Disease (HD), a potentially fatal condition in which missing nerve cells interfere with the colon’s ability to pass stool. HD can be inherited and Blakeley’s father, Shane, had dealt with the condition since an early age, so the risk was real. Yet pre-pregnancy counselors had assured the family that the risk was low.

While everyone celebrated the baby’s birth, Kimberly sensed subtle signs of trouble. When Blakeley vomited shortly after coming home from the hospital (vomiting is one possible symptom of HD), Kimberly believed her worst fears were realized. She decided to visit her local pediatrician who ordered non-invasive tests and in accord with the family’s wishes, referred Blakeley to University of Iowa Stead Family Children’s Hospital.

“It was the best thing we ever did,” Kimberly says. “This referral saved our baby’s life!”

The UI team, headed by pediatric surgeon Joel Shilyansky, MD, is specially trained and certified in the care of infants and children. Team members included pediatric anesthesiologists, certified registered nurse anesthetists, advanced care nurses, and therapists.

Biopsies proved that Blakeley had a complicated form of HD and would need staged, corrective surgery. Six days after her birth in May 2013, she underwent an operation that allowed her to eat and grow while allowing her abdominal system to function.

That October, Shilyansky’s team performed a Soave procedure in which they removed the bad section of Blakeley’s colon and reconstructed her intestines with a healthy segment. This created a modified yet functioning system.

Shilyansky says Blakeley is cured of her illness. “Other than routine follow-up care to watch for complications like dehydration and the risk of intestinal obstructions, Blakeley is an otherwise normal child,” he says.

Kimberly says a substantial amount of education was given to the family as Blakeley walked the road from evaluation to recovery. “There was a lot to learn, and UI Stead Family Children’s Hospital taught us everything we needed to know,” she says. “It made a huge difference.”

Blakeley will continue to be monitored by her UI team, and will receive ongoing follow-up care at the UI Stead Family Children’s Hospital location in nearby Bettendorf which offers pediatric specialty consultations and appointments with a variety of pediatric specialists. Shane and Kimberly both say they feel “extremely blessed to have met such an amazing doctor and pediatric surgical team!”

Risk factors

• Sibling with Hirschsprung's
• Being male (more common)
• Having other inherited conditions

Newborn symptoms

• No bowel movement
• Swollen belly
• Vomiting
• Constipation or gas
• Diarrhea

Symptoms in older children

• Swollen belly
• Chronic constipation
• Gas
• Failure to gain weight
• Fatigue

For more information call 855-543-2884 (KID AT UI)