Patient Stories Recognition

Celebrating Big for Savannah

Savannah is a happy, brave, adventurous 11-year-old girl who loves playing with her toys, watching cartoons and visiting local parks. Nothing stops Savannah from living every day of her life to the fullest—not even the colorectal issues that have caused her discomfort and health problems for much of her life.

Savannah was born with a rare chromosomal deletion, which means that she is missing some of the chromosomes containing the DNA that tells the body how to develop and function. Because she is missing these chromosomes, Savannah has developed several serious health conditions, including cerebral palsy, seizures, kidney and heart disease, a compromised immune system and complex bladder and bowel issues.

“She has been through so much in her 11 years,” says Savannah’s mother, Carolyn Standiford.

Savannah has had numerous hospitalizations and surgeries, making daily life for her family unpredictable. A morning might start out normal, with Carolyn caring for her four children while her husband is at work, then take a turn if one of Savannah’s conditions worsens.

“By dinnertime, we’ve taken an ambulance ride, we’ve been in an MRI machine, we’ve had an EKG and she’s in the PICU,” Standiford says. A medical assistant at St. Louis Children’s Hospital After Hours, Standiford’s knowledge of medical language comes from both her career in medicine and her experience caring for Savannah. “She has dealt with the most complex deck of cards, but it doesn’t ever bring her down.”

Carolyn Standiford and daughter Savannah at St. Louis Children’s Hospital

On one of these unpredictable days, Savannah’s belly became distended. She got sick and then, because she could not keep down her food or medication, she started to have seizures. Seeing the severity of the situation, Standiford rushed her daughter to the hospital.

The Search for Answers

Savannah has struggled with constipation all her life. For most people, constipation can cause discomfort, but is usually short-lived and can be treated with diet, laxatives or suppositories. These treatments did not work for Savannah, whose complex conditions often defy conventional wisdom.

As her mother says: “Savannah has always been one to throw the book out the window.”

Her constipation, which lasted a week or more at times, was causing Savannah to be sick, exacerbating her other conditions and triggering new problems.

To get her bowels moving, Savannah needed a “clean out,” which involved drinking the prep adult patients use to clear their colon prior to colonoscopy—a challenge for even a grown-up, let alone a 40-pound child. This treatment helped, but was difficult and yielded only temporary results. Shortly after a clean out, Savannah would be back to the hospital with another serious case of constipation. Her family wanted a more permanent solution that would help their daughter live comfortably and safely, without constipation, vomiting or seizures.

Baddr Shakhsheer, MD, Pediatric Surgeon

“Savannah’s constipation was very severe,” says Baddr Shakhsheer, MD, Assistant Professor of Pediatric Surgery at Washington University School of Medicine in St. Louis. “She was in the ICU on multiple occasions. She had abdominal distention, inability to stool, respiratory failure, sepsis, all being driven by the fact that she had this colon that was hypofunctioning.”

Motility testing—used to understand how Savannah’s colon was working and where there might be problems—revealed that her entire colon did not work. “All these years, we’ve been trying to fight this,” Standiford says, “and now we know what the problem is.”

An Angry Colon

The Pediatric Colorectal Center at St. Louis Children’s Hospital and the School of Medicine brings together multidisciplinary experts in pediatric care—including gastroenterology, radiology, rehabilitation, nursing and surgery—to provide high-quality care to children with complex colorectal issues like Savannah’s, as well as Hirschsprung Disease and anorectal malformations. Using state-of-the-art technology, top expertise, multidisciplinary care and goal-setting, the Pediatric Colorectal Center provides personalized solutions to improve the quality of life for children and their families.

“These are serious problems that have lifelong implications,” Shakhsheer recognizes. “In pediatric colorectal care, you’re entering into a long-term relationship with the family. You see them not only for the surgical procedure, but through the postoperative management as well.”

When Standiford met Shakhsheer at the center, she knew immediately that he was the surgeon she wanted taking care of Savannah. She says it took years to find the answers and the right combination of doctors for Savannah. At the Pediatric Colorectal Center, Savannah’s family found that combination.

“Dr. Baddr Shakhsheer has been such a blessing,” Standiford says. She describes him as a gentle giant. “He is very honest and straightforward. He’s smart and dedicated to his profession. Most importantly, he wants to make every child feel so much better.”

The first step on the path to making Savannah feel better was a conversation about goals. What would be the best outcome for Savannah? What treatment would help her family thrive? How could Shakhsheer help them achieve their goals?

“In pediatrics, we have to consider the patient’s and the family’s health,” Shakhsheer says about goal-setting. “Those two are not to be discussed separately, because they are intricately woven together.”

Through these conversations, Shakhsheer and Savannah’s family decided on a surgery that would remove her colon and connect her small intestine to her rectum. This procedure, called a subtotal colectomy with ileorectal anastomosis, helped Savannah overcome her constipation.

“When Dr. Baddr removed her colon, it was very large and inflamed, very mean and angry. It was ready to come out,” Standiford says.

After the surgery, Shakhsheer was with the family for Savannah’s recovery, every step of the way. Although Savannah’s conditions can be unpredictable, Shakhsheer never shied away from answering the family’s questions or checking up on Savannah. This is an important part of care at the Pediatric Colorectal Center: the multidisciplinary team provides each patient and family the tailored care they need.

Every Healthy Day is a Gift

After her surgery, Savannah is living her best life once again.

The morning after the procedure, she was back to watching cartoons and playing with her toys. Standiford says she learns something new from her daughter every day. Strength and resolve are just two lessons she has learned from Savannah.

“Savannah has also taught us that every healthy day is a gift,” Standiford says. When Savannah gets to come home after a long hospital stay, the entire family is excited to welcome her home. “We celebrate big.”

As a medical assistant at After Hours Convenient Care, Standiford sees many parents with sick children, and knows how to help and reassure them because she has been through so many similar experiences. After Hours provides convenient medical care for child illnesses and injuries by specially-trained pediatric nurse practitioners. After Hours is a kid-focused and faster alternative to ERs when the pediatrician’s office is closed. Pediatric care—both at home and work—is an integral part of Standiford’s life.

After surgery, Savannah is her happy, smiling self.

“I have a passion for helping other children and families,” she says.

Shakhsheer shares this sentiment.

“It’s a joy and a privilege to work with children,” he says. “There’s no other way to say it.”

Now that Savannah’s family is able to better control her bowel movements, Standiford looks forward to taking her daughter to the new, handicap-accessible neighborhood park to play. Savannah is excited to get back on the swings, which are her favorite.

What else is Savannah looking forward to? Soon, she will be a big sister to a newborn baby! The Standiford family is expecting their fifth child in January, and look forward to sharing their joy and love as their family continues to grow.