Something was wrong.
Angela Hall was a novice in the field of baby-making, and even she knew that.
It was her first level-two ultrasound, an occasion that perhaps not so coincidentally coincided with her first pregnancy.
At 25 weeks, mother and daughter had yet to officially meet face-to-face and even if they had, the baby probably wouldn’t have been in a talking mood.
Maybe it was a woman’s intuition. Maybe it was a burgeoning motherly instinct. Or maybe it was that the radiologist came into the room before the ultrasound was even finished.
But something was wrong. That much, at least, was clear.
The baby had an enlarged bladder, one that was pressing against her other organs — including the lungs. With the infant still weeks away from being born, the doctors didn’t hold out much hope.
“They were certain that she was going to die shortly after birth,” Hall said.
On the move
Fast-forward almost eight years and Amina Mannaa is just daring everyone else in her family to try and keep up.
She was running at full speed through the children’s area at The Arboretum at Penn State, a series of mock caves and dinosaur statues, as if the entire space was constructed with the intent of becoming prehistoric man’s answer to Colonial Williamsburg.
It was a bitterly cold and windy Saturday, but aside from a lone lament that she didn’t bring a blanket, Amina didn’t seem to care.
They were basically telling us that you can abort the baby if you want. It won’t survive.
She moved from one attraction to the next, tapping out a heartbreaking rendition of Spongebob Squarepants’ “Best Day Ever” one minute and imitating her 1 1/2-year-old brother Ibrahim’s repertoire of rudimentary dance steps the next.
Ibrahim was straggling behind her, struggling to keep up — but to be fair, he was doing better than most of the adults.
“Try and catch me,” Amina said.
It was easier to observe Amina on the rare occasion that she stopped moving, when she seemed like any other second-grader with an immunity to cold weather and a fondness for faux cave décor.
You had to look closely for the colostomy bag occasionally poking through her shirttail, the only outward sign there in The Arboretum that the past seven years had been hard-earned, the spoils of a war fought long before she could even speak.
Amina was an infant when she underwent a multi-organ transplant for a new pancreas, liver and small bowel. Very few people thought that she would make it this far.
Two people were determined that she would.
Born to run
Shortly after the results of the level-two ultrasound, Amina’s parents, Mannaa Mannaa and Angela Hall, met with doctors from the Children’s Hospital of Philadelphia.
The doctors were already talking about assigning the prospective mother and father a grieving team, people who could talk them through the difficult choices ahead.
“They were basically telling us that you can abort the baby if you want. It won’t survive,” Hall said.
Both parents ultimately decided that it was not up to them to decide whether someone should live or die. They would give their daughter every chance they could at survival.
“I thought the goal here was to expand her lifetime,” Mannaa said.
Angela was induced into labor at 37 weeks, successfully giving birth to Amina on March 20, 2008. The swelling in the baby’s bladder was almost immediately diagnosed as Berdon syndrome, a rare congenital disease.
Amina spent the next four months in the neonatal intensive-care unit at CHOP, where all of her nourishment was delivered courtesy of an IV.
Mannaa and Hall began gradually pushing the medical team to try giving their daughter real food, but the doctors were afraid that anything she ingested would wind up becoming lodged in her gut.
It was a never-ending cycle. Mannaa would spend days trying to convince the doctor to consider feeding Amina the breast milk that Hall had been pumping. He would come close — and then start all over again with new attending physician the following week.
A sympathetic nurse ultimately helped persuade the medical team to start Amina on 3 cubic centimeters of milk, delivered through a tube every hour.
The baby responded well enough that the dosage was eventually increased to 5 cc, but the real progress arrived inside Amina’s first poopy diaper.
As far as milestones go, parents traditionally prefer learning to crawl — some might even settle for the faintest hint of a giggle — but Mannaa and Hall were so jubilant over their daughter’s first bowel movement that they took the diaper home and put it in the freezer.
It was a small victory, a happy day in the middle of a long stretch of months.
Mannaa and Hall were spending every night in CHOP. When they weren’t sleeping or spending time with Amina, they were busy researching her condition.
Most of the medical articles they came across were not very encouraging, nor was the fact that IV nutrition begins to have a negative impact on the liver after about six months.
Mannaa and Hall began to explore the possibility of a small bowel transplant, a procedure that was not without its risks to the infant.
Even if the operation was successful, there was a chance that Amina’s body would reject the new organs, and Hall said that the survival rate drops after more than one transplant.
“We were making this big decision kind of on our own,” Hall said.
Both parents eventually elected to have the procedure performed at the University of Nebraska Medical Center.
Hospital regulations required transplant candidates to live within six hours of the facility, so the small family packed up and moved to Omaha.
They arrived in January and received the organ call on Valentine’s Day.
Onward and upward
Amina typically doesn’t discuss her medical history with friends — then again, what 7-year-old does?
She’s a social and outgoing girl. You don’t have to ask for her opinion on “Alvin and the Chipmunks” — she offers it, free of charge. Theodore is her favorite. Alvin is hilarious. She has trouble relating to Simon.
“Why is Simon obsessed with doing his homework?” Amina asked.
Her favorite subject at school is a five-way tie between recess, science, art, music and gym. Math is at best a distant second.
“She’s living a pretty normal life,” Hall said.
The transplant Amina underwent as an infant was successful, but both parents are constantly on the lookout for signs of organ rejection or viral infection. In both cases, the symptoms boil down to a fever and diarrhea.
“You’re fighting two opposite things, but they both exhibit the same symptoms,” Mannaa said.
She never has much of an appetite. Along with her pancreas, liver and spleen, the doctors had to remove Amina’s large and small intestines and two-thirds of her stomach — but it’s crucial that she eats between five and six times a day to maintain a layer of fat to help stave off infection.
We’re living in the moment with her, and she’s the happiest kid I’ve ever seen.
Convincing an uncooperative 7-year-old to eat a square meal has its challenges.
“Every meal is a battle,” Mannaa said.
Hall instituted a rewards system, where Amina earns points for drinking her protein shakes at school and maintaining a healthy diet. At the end of a good week, she receives a small toy.
Even the faintest trace of diarrhea can mean days in the hospital waiting for tests to come back. The family has a go-bag packed and ready for the first sign of digestive distress.
Amina was inclined to focus on the positive part of the experience, citing days spent in bed watching “Animal Planet” and eating mac and cheese with french fries shaped like smiley faces from the cafeteria.
“I love the hospital — that’s the weird thing,” Amina said.
What’s not as fun is when elements of the hospital spill over into her day-to-day life, especially as she becomes older and more self-conscious.
Mannaa said that every part of Amina’s life needs to be monitored. A nurse is with her throughout the school day in case there are any problems with her colostomy bag.
Even a decision as simple as whether or not to play soccer is weighted with implications. The game may burn more calories than Amina is capable of eating.
Mannaa, who is studying pre-med at Penn State, said that his daughter’s medical team is constantly surprised by how well she’s doing, but her future is still a mystery — just like everyone else’s.
Until then, there are songs to be sung and Christmas presents to be opened.
“We’re living in the moment with her, and she’s the happiest kid I’ve ever seen,” Mannaa said.