Our daughter, Mallory, was born with several congenital defects known cloacal exstrophy (OEIS – omphalocele, bladder exstrophy, imperforate anus and spinal defects) found in 1 and 400,000 live births. After Mallory’s 20-week gestational ultrasound, we were referred to Mayo Clinic in Rochester, Minnesota, from Mayo Clinic Health System – Red Cedar in Menomonie.
We instantly became patients of the Maternal Fetal Medicine team and were both closely monitored until birth. This monitoring involved several tests, ultrasounds and appointments. Mallory was born at 38 weeks' gestation at Mayo Clinic Hospital, Methodist Campus, on Oct. 19, 2014.
The defects identified at birth were more serious and complicated than originally predicted through prenatal monitoring. In the beginning, we wondered how these abnormalities were missed in the extensive prenatal monitoring. It was explained that Mallory’s condition of OEIS is so rare that the Maternal Fetal Medicine team did not know to even look for that type of defect.
Mallory spent her first 83 days at Mayo Clinic. Most days were in the Neonatal Intensive Care Unit, but the last few weeks were on the general pediatric floor.
During our time in the NICU, the entire team was amazing. Mallory was a special case. Almost every person on Mallory’s team was unfamiliar with her condition of OEIS, but no one ever feared the unknown. They were all dedicated to “fixing” her and committed to her having a “normal” life.
Mallory has an amazing team of dedicated specialists. She is part of Compact Care with Dr. Erin Knoebel, along with Urology, Neurosurgery, Pediatric Surgery, GI, Dietician/Nutrition, Allergy, PRM, and Orthopedics.
"Mayo Clinic has given us hope and realistic solutions to her 'never seen before' problems. She is a true testament to collaborative medicine."
Mallory is a miracle. Half the babies with her abnormalities don’t survive gestation. From the day she was born, Mayo Clinic has given us hope and realistic solutions to her “never seen before” problems. She is a true testament to collaborative medicine.
Our family has lived, witnessed and felt Mayo Clinic’s mission and values firsthand, and continue to experience it on a regular basis. We are thankful for Mayo Clinic and know that its clinical practice, education and research saved Mallory’s life and continues to give us a bright outlook for the future.
We are proud patients, thankful for access to superb health care. Mallory continues to surprise her medical team. When you read about her on paper, you expect to notice great physical abnormalities, but to the untrained eye, she is a happy, healthy, thriving toddler.
Mallory has endured four major surgeries (largest surgery – six hours on day 2 of life, involving 3 specialists teaming up to complete reconstruction of bladder, pelvis and bowels), multiple MRIs, hundreds of procedures, and numerous appointments. She’ll have medical challenges throughout life, but with the gift of Mayo Clinic, she is well on her way to living a happy, healthy and “normal” life.
Mayo Clinic has become part of our lives. We are thankful for strong dedication at all levels (Appointments, coordinators, social workers, HUCs, Housekeeping, CNAs, Child Life, nurses, NPs, flight crews, residents, fellows and consultants). Everyone plays an important role. We are blessed beyond words to have Mayo as part of our lives.
Tags: Cloacal Exstrophy, Labor and Delivery, Maternal Fetal Medicine, Mayo Clinic Children's Center, NICU, Obstetrics & Gynecology, Obstetrics and Gynecology, OEIS, Patient Stories, Pediatrics, Prenatal Monitoring