Harper's first birthday marks celebration, chance to support research

When Harper’s first birthday arrived, would she move like other babies? Would she require a shunt to prevent her brain from swelling? Would she be able to control her bladder and bowel functions?

And yet here she is with 120 people gathered around a pool to sing, eat cake and celebrate a little girl who seems, by all accounts, like any other 1-year-old. Some of the people attending the party only knew Harper from photos and Facebook posts before today. But they also know the Browns and their journey as if they were family.

For some of these guests, Harper represents hope and possibility. Diagnosed with spina bifida during her mother Jenna Brown's 18-week ultrasound appointment, Harper embodies the best possible outcome: physical strength, no developmental delays and all early assessments pointing to a normal life.

“We hold on to the right now, because the right now was never supposed to happen,” Jenna said. “She has just been a total and complete miracle.”

At the end of Harper’s pool party last month, those 120 guests left behind $2,000 for MUSC’s Pediatric Neuroscience Research Fund. Their gifts provide seed money for a fund that will offer both opportunities for researchers and education for future parents facing similar situations.

Jenna learned that her daughter had spina bifida at the only prenatal appointment she decided to attend on her own. She and her husband Stephen already knew that they were having a girl, so Jenna told her husband that she would go solo.

As the ultrasound technician scanned Jenna’s belly, she asked if Jenna had seen the doctor yet. Jenna knew something was wrong. Her physician explained that Harper had a cyst on her back, likely a spinal cord defect.

“My first thought was that my child will never walk,” Jenna said. She and Stephen went to MUSC Health and learned they had three options: They could terminate the pregnancy, attempt surgery at a medical facility in Philadelphia or wait until after Harper’s birth to address the problem.

They decided to try surgery sooner and, within days, they had packed their belongings for a four-month stay in Pennsylvania, where Jenna would complete her pregnancy. The couple drove through a snowstorm and endured 12 hours of testing before learning that Harper didn’t have a Chiari malformation, a condition in which brain tissue extends into the spinal canal. In other words, her case wasn’t pronounced enough to attempt the risky procedure. 

Jenna heard the physicians talk about bowel and bladder incontinence and realized, as they spoke, that she and Stephen would head home with even more questions. In the meantime, they decided to raise awareness about spina bifida, to start a Facebook page – and a conversation.

Jenna teaches middle school, and her colleagues bought and wore Hope for Harper T-shirts designed by Stephen's sister. Students donated money to wear yellow for Spina Bifida Awareness Month that October.

Harper was born on June 17, 2015, via C-section. When Stephen returned to the delivery room to tell Jenna about their baby, his eyes welled with tears. The lesion in Harper’s spine was covered with skin, protected from amniotic fluid – the best possibility.  

But the Browns’ joy only lasted a day. Their neonatologist stopped by with bad news the next morning; Harper had developed a Chiari malformation after all. 

Her surgery went so well that her anticipated month-long stay at the hospital lasted only one week, and the Browns went home on Harper’s original due date. Harper never needed a shunt, never needed another surgery. The Browns continued with their online updates to friends and other parents following along.

“We were handed a gift, because we were meant to help others,” Jenna said. “The outcome shows me that she was really meant for this.”

At her six-month appointment, Jenna asked her daughter’s neurosurgeon, Ramin Eskandari, M.D., what she could do to help his work. Eskandari connected her with other mothers who needed to hear Harper’s story.

“When you have someone who has had the best outcome, talking with them is going to be able to give you more than family and friends can - knowing that there’s hope and possibility,” Eskandari said.

Jenna wanted to do more. Eskandari established the Pediatric Neuroscience Research Fund with the goal of recruiting world-class researchers, providing funding for their work and offering lectures to families faced with the same decisions and challenges as the Browns.

“Having private funding that is meaningful closes the gap with patient care and research,” he said.

Harper’s first birthday party marks the beginning of the Browns’ support for Eskandari’s fund. Jenna wants to organize a 10k race and a softball tournament in the months to come.

“This is our purpose. It really is,” Jenna said. “She proves that miracles do happen.” 

To follow Harper's journey, visit www.facebook.com/hopeforharperbrown.