Libbie: A Family Finds World-Class Colorectal Care in Their Backyard

Libbie’s medical journey with Children's Hospital Colorado began when she was six hours old. Her mom, Linsey, had her at a hospital nearby. The pregnancy went well and so did the delivery. Libbie was a larger baby when she was born and was having some slight blood sugar issues. The glucometer in the nursery wasn’t working so the nurse said they were going to bring her into the NICU to test her blood sugar. During all this back-and-forth, Linsey, who has a medical background, realized she hadn’t changed Libbie’s first diaper yet — also called a meconium diaper. She asked the nurse if maybe one of them had changed it and the nurse said she would check.

“I was finally just getting out of bed to get up and take a shower for the first time after the delivery,” says Linsey. “My husband and I were both in our room and the nurse came back in with the on-call OB-GYN. They didn't tell me to sit down or anything, they just told me, ‘We’ve contacted Children's Hospital, we need to transport Libbie immediately. She doesn't have any kind of an anus, and she hasn’t had any kind of a stool.’” Linsey and her husband, Randy, were shocked.

Linsey’s thoughts were racing as they followed the ambulance from one hospital to the next. After several chaotic hours, Linsey and Randy entered Children’s Colorado and felt something unusual — calm. 

“From the minute we walked in, everybody at Children's Colorado was just amazing,” says Linsey. “It was about 10 P.M., it was Christmas time, and we drove up to the ER entrance and everything was lit up so beautifully, it was almost calming at that moment because it was such a nice thing to come into.”

Linsey says they weren't bombarded at the door with requests to fill out paperwork or show insurance cards and identification. The team led her and Randy straight to our NICU where they met an even larger team of doctors, nurses and surgeons.

Learning the diagnosis and finding the right expertise

Libbie was diagnosed with an anorectal malformation, a birth defect that causes the anus and rectum to not develop properly. The team performed all the necessary testing and treatments to make sure Libbie was in the best place she could be. Linsey jokes that Libbie had more done medically in her first 24 hours of life than most adults do in their entire lifetime.

After a flurry of activity to ensure Libbie was safe and on a good path, John Bealer, MD, met with Linsey and Randy to go over Libbie’s diagnosis and treatment path forward. Dr. Bealer is a pediatric surgeon whose specialties include congenital gastrointestinal anomalies including anorectal malformations. Also a trauma medical director with a background in fetal surgery, Dr. Bealer’s specialties and experience made him the perfect candidate to care for Libbie’s unique situation.

“Dr. Bealer was just amazing,” says Linsey. “And so was the whole staff. You don't have to be in Children's Hospital Colorado very long to appreciate that it could always be worse. We were very, very fortunate.”

Dr. Bealer explained that while Libbie had the least severe type of anorectal malformations, it was still serious, and she would still need surgery. However, the surgery wasn’t so urgent that they needed to do it right away so Libbie could grow a little more, put on some weight and be in a better place to help result in a better surgical outcome.

“Dr. Bealer explained everything to us in a very simple way so my husband and I could understand the situation,” Linsey says. “He was great at answering all levels of questions, telling us what the next steps were and what her life would look like beyond surgery. He also explained what we could do in the next three months to get her in the best place prior to having surgery. We were so grateful for him and for the entire team at Children's Colorado.”

Surgery and unexpected support

The family returned about three months later for the planned surgery to correct the anorectal malformation. The surgery went well and while Linsey and Randy had nothing but praise for the surgeons, doctors and nurses involved in the surgery, help during this challenging time actually came from an unexpected place for Linsey.

Due to surgery, Libbie was on IV nutrition and couldn’t nurse for eight days. Linsey was breastfeeding, which meant she would have to pump her breast milk and save it, but she was dealing with some issues. This is when Linsey was introduced to one of our lactation consultants.

“The lactation consultant was phenomenal,” says Linsey. “Even when we came back for a GI study a couple years ago, I was able to take Libbie back and meet that lactation consultant again. She remembered us and she was just an angel.”

Not only did Libbie receive great treatment, but Linsey and Randy truly experienced the way Children’s Colorado treats not just the patient, but the entire family.

The right program helps immensely

Libbie is now 10 years old and continues routine visits, now with our International Center for Colorectal and Urogenital Care. Libbie receives her follow up care with Andrea Bischoff, MD, who is well known around the world as one of the most experienced doctors specializing in colorectal conditions like anorectal malformations. “Dr. Bischoff is phenomenal. Her team is so great too and I have nothing but great things to say. We are so lucky,” says Linsey.

Even with perfect surgeries, anorectal malformations often affect people their entire lives. As Libbie grew older and began attending school, things like bowel management became more important.

“Dr. Bischoff’s expertise with bowel management has helped us so much,” says Linsey, referring to Libbie’s participation in the Bowel Management Program. “We didn’t know how much better it could be until we joined that program. We were in this program along with people that traveled from all over the world. There was a mom there from Brazil, and I thought, my gosh, me having to drive two hours is nothing. I hadn’t realized how blessed I am that I have one of the only programs like this at this level in the entire world, and I have it right here in Colorado. I immediately called my husband that night and said, you have no idea how fortunate we are to have this team in Denver. It’s just incredible.”

Libbie continues to visit our International Center for Colorectal and Urogenital Care and receives world-renowned care right in her backyard. She’s even joined the Support for Urology and Colorectal Group Education (SURGE) support group, which provides a safe space for youth with similar urological conditions and families across the region to come together and discuss challenges and successes that come with living with a chronic condition that impacts the urologic tract, kidneys and more. While Linsey says she never thought she’d find herself in the position she’s in, she also says she knows she and her daughter couldn’t be in better hands.