Praying for Piper

Piper Hegland is a fighter, and she has inspired many with her perseverance in the face of overwhelming challenges.

Unfortunately, that fight recently became more difficult, as the 7-year-old found herself back in the hospital undergoing her second brain surgery.

Piper was born with a rare condition called spina bifida, which occurs when a child's spine fails to develop properly in the womb. The condition can cause significant long-term health complications and often requires invasive surgeries.

The first grader has had to use a walker and wheelchair to get around, but that hasn't stopped her radiant smile and outgoing nature from permeating through every room she enters.

Piper's mom, Amanda Hegland, said her daughter has already been through almost a dozen surgeries in her young life, and to say she's developed a fighter's mentality over the years would be an understatement.

Her most recent surgeries occurred within the past few weeks, after Amanda said they spent several weeks trying to discover why Piper had suddenly become very ill.

"She first got sick on October 7, and originally it was just a UTI (urinary tract infection) and she was on antibiotics for that," said Hegland. "But on the 19th she was still sick so we took her to the ER in Fargo and the doctors thought it might have been developing into a kidney infection, so they switched up her medication."

The medication successfully treated her UTI, but Piper was still struggling with a number of painful symptoms.

Amanda described how her daughter could seem fine one moment, and suddenly "crash" moments later, experiencing pain and headaches so severe that she almost couldn't move.

There were several more clinic and hospital visits in late October as a result, but none resulted in a diagnosis.

All the while, Amanda was talking with other spina bifida parents who encouraged her to keep pushing for answers, and it wasn't until Friday, Nov. 1 that Piper was finally admitted to the hospital after yet another emergency room visit in Fargo.

By the time she was admitted, however, Piper was suffering from sepsis, a serious complication of infections which can lead to organ failure if left untreated.

She was immediately started on a heavy course of antibiotics, but Piper was still experiencing headaches, high fevers, severe stomach pain, vomiting and mood swings.

And despite knowing an infection existed, locating the source of that infection proved difficult for her medical team.

Meanwhile, family, friends and community members were doing their best to support the Heglands and keep a smile on Piper's face in spite of everything.

"Our faith really gets us through it," said Amanda. "I have to keep reminding myself that my faith is bigger than my fears.

"And all of the support we get from our family and friends is so important," she added. "It's nice to know that my kids are in good hands and that our neighbors are helping finish the harvest. So just knowing that we have people to count on really helps."

Extended family, friends and even some of her school teachers have visited Piper in Fargo recently. She was also able to connect with some of her friends and classmates via video call.

However, Amanda said she and Piper had a particularly frightening experience not long after one of those calls.

"She was facetiming her friends one day and she was super happy, but literally just 30 minutes later she crashed and just became so sick. She was screaming in pain and started throwing up, and we couldn't even have the lights on," recalled Hegland.

"It was the scariest day ever, because she was just so uncontrollably sick and nobody knew why. We couldn't figure out where the infection was."

But just as it seemed Piper's illness was going from bad to worse, something miraculous happened.

Dating back to mid-October when Piper was first getting sick, Amanda had been suspecting a complication with Piper's shunt, which runs from her brain down through her neck and chest, into her abdomen.

It was first installed when Piper was just seven days old, and it's responsible for draining spinal fluid from the ventricles in her brain – a process that can't happen naturally due to her spina bifida.

As they talked to several doctors in October and professionals at the hospital in early November, Amanda said she kept asking about the possibility of a shunt malfunction or some kind of meningitis, which is a type of infection.

And as they say, "A mother always knows."

Eventually, doctors also began to suspect an infection stemming from Piper's shunt, but her neurosurgeon needed a "smoking gun" to confirm the diagnosis before conducting an intrusive brain surgery.

And just as they began to consider transporting Piper to a larger hospital in hopes of finding answers, one of the cultures taken from the shunt days earlier finally came back positive for infection.

"One of the doctor's told me it was darn near a miracle that bacteria grew in the culture after having been treated with antibiotics for so long," said Hegland. "Otherwise we wouldn't have an answer and once we took her off antibiotics, she would have started getting really sick again."

Piper had been on a variety of bacteria-killing antibiotics since it was first discovered she had a UTI back on October 7, yet somehow just enough bacteria survived to give doctors exactly the proof they needed.

More specifically, it was discovered that Piper was suffering from ventriculitis, a rare infection of the brain's ventricles and a complication of meningitis.

Piper was in surgery soon after on Wednesday, Nov. 6, and for about three hours surgeons worked to remove the infected shunt and install an EVD (external ventricular drain), which is essentially a tube in her brain that can drain spinal fluid – a temporary replacement for her shunt.

Amanda said the surgery was a success and that Piper has been doing better ever since. She's now undergoing a 14-day regimen of antibiotics to fight the infection, after which she'll likely have a third brain surgery to install another shunt.

First though, Amanda said doctors are going to see how Piper does without the shunt, and if all goes well, it's possible a new one won't be necessary – that's the best case scenario.

But for now, the Heglands are simply tackling one day at a time.

On Tuesday, Nov. 12, Piper was able to get out of her hospital bed and into a wheelchair for the first time since being admitted, and Amanda said it feels like they're finally headed in the right direction.

Throughout this ordeal, she's been posting regular updates to Facebook about her daughter's progress, and the outpouring of support has been immense.

"I literally read every single message, and I truly believe in the power of prayer and the power of good thoughts and positive thinking," said Amanda. "It's been amazing because we've had people reach out and say they have family and friends all over the country and the world praying for Piper.

"I'm just truly thankful," she added, fighting back tears. "We really couldn't get through this without friends, family and the community support."

Amanda and Piper will be staying at the hospital a little while longer as she continues treatment. They're hoping to return home sometime in late November, and once they're back, there will be a way for local residents to help out and show their support.

Ashley Lies, an Eddy County resident and a good friend of the Heglands, is organizing a "meal train" for when Amanda and Piper get home.

It's an opportunity for residents to prepare a meal for the Hegland family, allowing them to focus on healing and resting after such a stressful ordeal.

Those interested can offer to prepare a meal by messaging Lies on Facebook. She'll keep participants in the loop with dates, and they'll be given at least three days advance notice for providing meals. Lies can be found on Facebook at http://www.facebook.com/ashley.lies.351.