The Free Press, Mankato, MN

February 3, 2013

Parents see child’s survival as miracle

By Robb Murray
Free Press Staff Writer

— While the surgeon put her daughter back together — carefully placing tiny intestines back inside a tiny body — Vicki Frank prayed.

Prayed not so much to save the child’s life, but for the child’s soul. Frank knew it was over; the little girl she’d carried in her womb, a twin whose sister was thriving, was about to lose her long medical battle.

The little girl had fought hard, but this was enough. Modern medicine was out of answers. To prolong her life with heroic measures seemed pointless and would only result in a beautiful little girl spending a year or so in agony. No more suffering. Just let her go. It’s OK, Elea. You can let go.

This procedure was supposed to be relatively simple and last roughly 30 minutes. But 30 minutes turned into an hour, which turned into an hour and a half.

As it continued to go beyond the estimated 30 minutes, Vicki’s mom, Cindy Wendt, wondered whether the girl had possibly improved.

“We’re not the kind of people who get miracles, Mom,” Frank admonished her mother that day.

An hour and a half turned into two hours, which turned into 2 1/2. And when the surgeon finally emerged, the gravity of his clinical utterance at first wasn’t clear to Vicki Frank.

“She has 38 centimeters,” he said.

“What does that mean?” Frank asked.

“It means it’s liveable.”

And just like that, Elea Frank — a girl who doctors said had no future and concurred with the family’s wishes to let her die — had stared down death ... and death blinked.

“The chaplain said, ‘I’ve seen many miracles in my life, but nothing to the magnitude of Elea,’” recalled Wendt, Elea’s grandmother.

In a few months, a benefit will be held for the family and for Elea. But the truth is, Elea’s breathing body is gift enough for Frank.

“We are just completely blessed,” she said. “I don’t know any other words to say. We just enjoy every moment with all three of our kids.”

Frank’s odyssey with her twins began in August 2010. During a visit to a doctor she was told she’d had a miscarriage and was advised to follow up with her regular obstetrician. On that follow-up visit, however, she learned she still had a living baby in her womb.

In further follow-up care, she was scheduled for several ultrasounds where, during one visit, a sonographer gaped at the screen and informed Frank she was carrying twins.

A few weeks later, however, another ultrasound found that one of the twins was growing faster than the other. After doing a few tests, doctors surmised it might be a condition called twin to twin transfusion syndrome. The condition is characterized by compromised blood flow between twins that results in one being malnourished and the other having a heart that needs to work twice as hard to pump the increased blood volume.

She was put on bed rest and given medication to stave off the onset of labor.

Doctors at Abbott Northwestern Hospital said one of her twins also may be suffering from a condition called intrauterine growth restriction. Eventually they ordered her to be hospitalized at Abbott until delivery day. They monitored the progress of the twins constantly, and when she finally gave birth, they wrapped the babies up, let her hold them briefly, then whisked them away to Children’s Hospital, a short walk from Abbott.

After their birth, doctors determined Emmi had been using 70 percent of the placenta while Elea had just 30 percent. After birth by cesarean section, both kids were considered high risk and placed into a neonatal intensive care unit. Emmi thrived and was allowed to leave before her due date. Elea, however, struggled.

She was diagnosed with patent ductus arteriosus, a condition where the aorta and pulmonary arteries fail to properly close after birth, compromising proper blood flow and heart function. She was also diagnosed with tethered cords in her spine, a level-one brain bleed and ventricular septal defect (a small hole in the heart).

While hospitalized at 9 months of age, Elea’s condition improved slightly but then worsened. Frank recalled visiting one day to see Elea’s belly slightly distended. By the next day ...

“She looked pregnant,” Frank said.

Doctors determined she needed surgery, after which came that grim moment when they gave the family two options: give her intravenous nutrition and hope she makes it two years, or let her go.

“We didn’t want to see her suffer,” Frank said.

The problem was her small intestines. She was suffering from a condition known as necrotizing entercolitis, which essentially means parts of her intestines were dying. And when doctors initially discovered it, they determined it was already too late. Thus the poor prospects for survival.

But a doctor figured there was enough intestine left to give the girl 24 hours and see what happened.

And so the family spent what they thought was their last night with Elea. There was no sleep. There was only prayer. And hope.

Somewhere along the line, a doctor or nurse — Frank doesn’t know who at this point — massaged some of Elea’s intestines back to health.

And by the next morning, doctors made that discovery during a nearly three-hour procedure in which they found 38 centimeters of small intestine had come back to life in her abdomen.

Afterward, Frank said, doctors were in tears. Nurses left the hospital crying. Frank has no doubt that a miracle happened that day.

She’d survived, but she wasn’t out of the woods yet. Her necrotizing entercolitis resulted in short bowel syndrome, and her recovery, Frank knew, would be a long one.

She continued to have complications, and was dealing with a central line called a TPN that delivered nutrition directly to her heart. TPN lines, Frank said, are dangerous and must be handled with caution. Any mistakes in handling could result in infection, and with a patient so young and vulnerable, such a mistake could be fatal.

At this point, the most pressing concern was a dirty one.

“The biggest issue is pooping,” she said.

Because Elea lacked the amount of small intestine most kids have, her bowel movements were many. And because the stool that emerged didn’t have the normal filtration a normal small intestine can give it, it was highly acidic. That acid is hard on Elea’s bottom, which means her caregivers have to be on constant alert for diaper rash.

They also had to monitor her stool for changes in color, consistency or frequency because changes in any of those could be clues to problems in her body. A tough job, for sure.

By May 2012, she still wasn’t thriving at home, so Frank sought answers. The advice she got was to take Elea to the University of Nebraska Medical Center in Omaha that specializes in this condition. They went, and not only did they get the help they needed, but they also enrolled Elea in an eating therapy program so intensive and so comprehensive that it comes with a price tag of between $50,000 and $80,000.

The eating therapy helped, as did the Nebraska doctors, who were able to stabilize Elea’s digestive progress. Perhaps most importantly, the Nebraska doctors were able to detect and treat an infection in Elea’s TPN line early enough that it didn’t cause her much trouble. By November, that TPN line was removed.

Today, she’s well on her way to recovery. Development wise, she’s behind her twin sister. But the two are working together to catch Elea up.

“When Elea went through all her surgeries, Emmi was always a different baby. She would be cranky upset and not take naps until after Elea would have a surgery and be stable. Then Emmi would be normal again,” Frank said. “Even in Nebraska, the night before her surgery to get her new (TPN line), Emmi did not sleep that night and was up before I was to see Elea before surgery. Emmi really looks out for her twin.

“It helps to have Emmi because Elea looks up to her and wants to do the same things as her twin and older sister.”

And now the chances are that she will.