‘Supported and heard’: Harven gets care for an anorectal malformation

Like lots of 3-year-olds, Harven Gifford has a great imagination. Lately, he’s taken to roaring loudly and pretending that he’s a lion. But it wasn’t long ago that his parents, Heather and Brian, had to be Harven’s voice, when an unexpected health concern turned them into strong advocates for their son.

Although Harven’s delivery went smoothly, it was clear within just a day of his birth that something was amiss: He wasn’t urinating, hadn’t passed his meconium (a baby’s first stool), and was throwing up. Heather paged the nurses at her birth hospital in Massachusetts but was told there was nothing to worry about.

“I’m not a first-time parent,” says Heather, who is also mom to Nevaeh, now 7. “I knew something was wrong.”

As Harven seemed to get even sicker, Heather and Brian’s concerns grew. And when they changed his diaper for the first time, they realized their fears were justified: He didn’t appear to have an anus.

Heartbroken but thankful

Recognizing that the situation was an emergency, Heather’s birth hospital called for an ambulance to bring Harven to Boston Children’s Hospital. There, he was diagnosed with an imperforate anus with a rectoprostatic fistula. This type of anorectal malformation occurs when a child is born without an anal opening, making them unable to pass stool properly. He also had hypospadias, in which the opening of the urethra is located on the underside of the penis rather than at the tip. 

Harven would need to have emergency surgery, as well as additional procedures later on to address the malformation and repair the hypospadias.

“We were heartbroken but thankful to finally be taken seriously,” says Heather. “The doctors told us that if we had waited any longer, Harven wouldn’t have made it.”

Compassion during difficult times

Just a few days later, in February 2021, Harven underwent ostomy surgery with Dr. Prathima Nandivada, a surgeon in Boston Children’s Colorectal and Pelvic Malformation Center. This procedure created a stoma, an opening in his abdomen that allowed him to pass waste into a collection pouch. A few months after that, Dr. Nandivada performed a posterior sagittal anorectoplasty (PSARP). A PSARP surgically creates a child’s anus from their sphincter muscle.

It was a stressful time for the Giffords, particularly because the COVID-19 pandemic prevented loved ones from visiting. They also found it difficult to explain the concept of an imperforate anus — something most people haven’t heard of — to friends and family. Despite these challenges, they were grateful for the care Harven was receiving.

“Everyone at Boston Children’s was so compassionate,” says Heather. “We never felt like we were in the dark about what to expect.” The NICU nurses also taught the couple how to change Harven’s ostomy bag and care for him in between surgeries. Although it was hard as parents not to be able “fix” everything for their son, Heather says that leaning on her faith and trusting the clinical team helped get them through.

A bright future for Harven

Harven’s ostomy was reversed and his stoma was closed that July; when he was a year old, Dr. Erin McNamara repaired his hypospadias. Today, he’s “a regular boy” who — when he’s not in lion mode — loves “Thomas the Train,” fire trucks, and playing hide and seek with his big sister. He’s finished with surgeries and only needs yearly check-ins with Dr. Nandivada and the team, who the Giffords say have become like family.

“They’ve provided us with more than just medical and surgical care,” says Heather. “They help us feel supported — and heard.”

Learn more about the Colorectal and Pelvic Malformation Center.