Hope for Harper

08.29.17

Families are never fully prepared to learn that their beloved baby has a birth defect, but one SC mom is working to make their road a little less rocky
by sharing her own story and advocating for the littlest patients.

Stephen and Jenna Brown of Hanahan, SC were eagerly anticipating the birth of their first child, Harper. They found out she was a girl at a 15 week
ultrasound and had seen her beautiful face at a keepsake 17 week scan. Feeling excited and confident, Jenna went alone to her doctor’s office for
her routine 18 week ultrasound. Though Stephen offered to come, Jenna had resisted, wanting him to go to work and have more time off when the baby
arrived.

“When the doctor came in, the ultrasound tech reached out and took my hand. That was my first sinking moment of despair,” shared Jenna.

There was a cyst at the bottom of Harper’s spine, possibly spina bifida.

‘My daughter will never walk,’ was her first thought. As she waited in the office holding her daughter’s ultrasound picture and crying, Jenna texted
her husband. Later that day they were worked in at the Medical University of SC (MUSC).

Spina bifida was confirmed.

The Browns elected to pursue in-utero surgery which could provide Harper with the best hope for a positive outcome. After an amniocentesis and two
long weeks of waiting, they drove to Philadelphia where the highly-specialized surgery is performed, ready to put their life on hold for baby Harper.
Jenna endured 12 hours of testing only to learn that she was not a candidate for the procedure.

“We left Philadelphia devastated,” she said. “They reevaluated us at 25 weeks, but we still were not eligible for the surgery.”

At that point, the Browns met with Dr. Ramin Eskandari, a pediatric neurosurgeon at MUSC, to discuss Harper’s surgery after delivery. “He was the
first one who gave us hope,” said Jenna. “This was not the worst-case scenario we had read about on the internet, maybe her lesion was even covered!”
When spina bifida lesions are covered they are protected from the damaging effects of the amniotic fluid.

The Browns followed up at MUSC every two weeks until Harper was delivered on June 17, 2015, with family in the waiting room wearing their ‘Hope for
Harper’ t-shirts.

After delivery, Harper was whisked away for an evaluation, and Stephen went with her. “He came back to my room with tears flowing, but couldn’t get
the words out.”

My heart sank again, but he said ‘No, it’s good – it’s covered.’

The next day Harper had her closure surgery. She went home on June 24th, her original due date.

Jane Dean of GGC’s SC Birth Defects Prevention Program met the family
when Harper was about a month old. “I immediately fell in love with this strong, amazing family.” Dean provided counseling and information and
enrolled the family into GGC’s folic acid study.

“I was taking folic acid during my pregnancy,” shared Jenna, “so I wanted to help understand what other factors may be involved – why it didn’t work
for Harper.”

Since Harper’s birth, Jenna has left her teaching career to become a full-time mom. Harper is thriving. She is walking and running thanks to successful
surgeries and ongoing physical and occupational therapy. Now, Jenna and Harper spend their days volunteering with MUSC’s Children’s Hospital, hosting
events, advocating for patients, and attending appointments with families who are facing the same challenges they have endured – providing hope.

Jenna also recently joined Dean at a bridal show in Charleston to help promote the importance of folic acid before and during pregnancy.

“Your story could be different, your journey could be different than what you planned,” said Jenna. “Ours is, but there is always hope.”

Meet Ella

We will remember February 26th for the rest of our lives. On that day, we received the call from the Greenwood Genetic Center that they had discovered our daughter, Ella Marie, has Kleefstra syndrome. Very early on, my wife, Kelly, observed Ella being delayed in some of her milestones. Kelly monitored Ella’s progression and sought out testing in an effort to get Ella some assistance. Along the way, we were sent to GGC and met with LEARN MORE

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