At 1-week-old, Kelli-Jain was treated for a congenital heart defect: patent ductus arteriosus (PDA). PDA is a medical condition where the ductus arteriosus blood vessel fails to close after birth, allowing for abnormal blood flow between two of the major arteries connected to the heart. If left untreated, PDA can lead to pulmonary hypertension and right-sided heart failure.
To correct this issue, Kelli-Jain was treated at another area hospital with an Indocin injection which works to constrict and close the blood vessel that causes abnormal blood flow. Following her treatment, she experienced necrotizing enterocolitis (NEC), a condition seen in premature newborns that causes segments of intestinal tissue to die, leading to serious abdominal infections.
To receive more specialized care, Kelli-Jain was transferred to MemorialCare Miller Children’s & Women’s Hospital Long Beach, and put under the care of Barry Steinmetz, M.D., pediatric gastroenterologist, associate medical director, Pediatric Gastroenterology, Hepatology and Nutrition Center.
The Gastroenterology & Nutrition Center at Miller Children’s & Women’s is a California Children’s Services (CCS) approved Special Care Center (SCC) for gastrointestinal disorders, providing a multi-disciplinary and multi-specialty approach for gastrointestinal conditions. The center offers an Inflammatory Bowel Disease (IBD) Program, gastrointestinal lab and motility program that treats neonates, infants, pediatric and adolescent patients with a wide range of specialists.
Miller Children’s & Women’s is one of the few hospitals on the West Coast to perform impedance studies and catheter-free intraesophageal pH probe tests. These specific studies and tests evaluate all types of gastroesophageal reflux in a more comfortable way compared to previous tests. In addition, the Cherese Mari Laulhere Child Life Program makes the hospital experience a more positive one with a dedicated team of child life specialists to help alleviate fears and cope with hospitalization by offering activities, playrooms and pet therapy to distract and engage the child or adolescent throughout their treatment.
“From the moment we arrived at Miller Children’s we were treated with the most amazing care,” says Kelli-Jain’s mom, Kim. “From the doctors, to nurses, to the pharmacists, to the pulmonary technicians and everyone else – they were all wonderful.”
Kelli-Jain underwent numerous treatments and surgeries, involving two ileostomies, a surgical procedure which creates an opening in the belly that allows intestinal waste to pass through and be collected in an artificial external pouching system. Due to unknown reasons, Kelli-Jain’s intestines became obstructed, and a surgery was performed to remove two-thirds of her small intestine. Since a large part of the small intestine was removed, she was left with borderline short bowel syndrome, a condition in which nutrients cannot be properly absorbed.
To ensure she was receiving the nutrients she needed, Kelli-Jain was fitted with a gastro-jejunal (G-J) feeding tube, and each year Dr. Steinmetz would fine-tune her treatment and types of feeding tubes. Every day for three years, Kelli-Jain and her parents monitored her feeding tubes, watching her graduate from a G-J tube to a gastrostomy tube (G-tube).
“The enteric tube placements were great options so she could meet caloric and nutritional needs,” says Dr. Steinmetz. “It’s important to go over all the options and work with the family to ween off tube feeding when possible.”
At 6-years-old, Kelli-Jain was able to successfully take food through her mouth, meet her caloric needs and stop all intravenous nutrition.
Now, a soon-to-be middle school graduate, Kelli-Jain is off all her medications and eats normally. Kelli-Jain awaits high school this fall and is looking forward to exploring criminal law and forensic pathway when she begins. She is excited for this next chapter in her life, planning for family trips that she has not been able to go on in the past.
“I can’t stress enough the impact that Dr. Steinmetz, his team and the carefully orchestrated treatment plans have made on Kelli-Jain’s life,” says mom, Kim. “We always wished for all the normal things to happen. I think that’s what every family that has a sick child wishes for, and Dr. Steinmetz and his exceptional medical staff has given her the opportunity to have a normal teenage life.”