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5/3/2013 6:01:00 AM
'She's a smiler': Rare condition doesn't hold down Kingman infant
Six months on, Aurelia Grant is thriving
By DOUG McMURDO/MinerLiz and Ben Grant, their son Alex and Ben’s mom, Kathy, pose with Aurelia in the family’s Kingman home.

Liz and Ben Grant, their son Alex and Ben’s mom, Kathy, pose with Aurelia in the family’s Kingman home.

Doug McMurdo
Miner Staff Reporter

KINGMAN - Aurelia Grant was born with all the right parts, but they weren't where they were supposed to be.

Not even close.

A diaphragmatic hernia meant there was no way for Aurelia's tiny body to hold her organs in place. While in her mother's womb, Aurelia's intestines moved up and squished her heart, lungs and other organs to the side.

Liz Grant's doctors had no idea her daughter's Oct. 30 birth would be anything but normal, but seconds after Aurelia entered the world their medical skills would be put to the test.

Born to fight

She didn't cry. The only sounds that left her mouth were a couple of gasps. She couldn't breathe because a mass of tissue had blocked her airway. Her health providers struggled to put in a breathing tube. When they finally managed to get it in, Aurelia still couldn't breathe because her lungs were not where they were supposed to be.

The Kingman Daily Miner told Aurelia's story early in December, when she was about a month old and there were serious doubts she would live another month.

Her parents, Ben and Liz Grant, are happy to note Aurelia is doing remarkably well. The only outward sign that she isn't a perfectly healthy 6-month old is the 24-hour feeding tube inserted in her stomach.

"She smiled and cooed every time someone came to her bedside," said Liz, the director of Little Eagle Preschool In Kingman. "She'll talk nonstop and everyone at the hospitals just loved her."

A 'missed twinning'

But Aurelia is far from a typical baby. In six months she has already gone through more serious surgeries than have most people who have lived for six decades. More are planned for the future.

She's knocked on death's door so many times her knuckles are bruised. She's been treated in Phoenix, Las Vegas and Salt Lake City.

Aurelia's been home for five weeks, and life has started to return to normal for Ben and Liz Grant, their son Alex and Ben's mother, Kathy.

The day of her birth, doctors speculated Aurelia was born either with an extremely rare centerline deformity or an even rarer case of twins not fully separating.

It was in Utah that geneticists conclusively determined Aurelia's birth was a "missed twinning."

The cells from which Aurelia grew tried to spit into a twin. For the first five months, she was absolutely dependent on machines to keep her alive.

She has two pituitary glands and her neck vertebrae are shaped like butterflies, two indicators that gave doctors something to look at in making their diagnosis - and two conditions that could cause Aurelia more problems as she grows older.

Future surgeries

"She needs surgery to reconstruct her palate," said Liz. "That will occur probably in July."

"They may have to do something for her vertebrae."

Doctors initially thought Aurelia's diaphragm tore and that allowed her organs to play a deadly serious game of musical chairs. In reality, the left side of her diaphragm never formed.

Doctors stretched her abdominal muscles from the right to the left side and attached them to the unformed diaphragm.

The surgery had to be repeated because her stomach kept trying to sneak back up.

It was Aurelia's stomach that bore the brunt of the squeezing, leaving it shaped like a banana and unable to digest food. Hence the feeding tubes.

The esophagus, liver, bowels and everything else that was jammed into her chest cavity took its toll.

Her right lung functions properly, but her left lung is operating at about 50 percent of what it should.

The strain on her heart caused her to suffer with pulmonary hypertension. The results of Aurelia's most recent electrocardiogram were great, said Liz, "But we still need to keep an eye on it."

Normal brain activity

The good news is Aurelia's hearing and eyesight are good, her liver, bladder and kidneys function correctly and her brain is as normal as could be for a six-month-old.

"Her pediatrician is amazed," said Liz. "She has no brain damage despite going into cardiac arrest, regularly undergoing life-saving intervention and a lot of blood thinners," said Liz.

There is no timetable set for Aurelia to live without the feeding tube. Her doctors do not agree even if she will ever eat on her own.

"She has to get her mouth repaired," said Liz. "Her surgeon isn't optimistic. He says she has to get older so she doesn't accidentally inhale food back into her lungs, but her other doctors are a little more optimistic."

Aurelia weighed seven pounds and 15 ounces the day she was born. Now she weighs more than 15 pounds, gaining a little more than a pound a month.

"She's packing on the weight," said a beaming Liz. "She's healthy and she's a smiler."

Extremely rare

Expectant mothers and fathers shouldn't worry about what happened to Aurelia happening to their child.

"This is incredibly rare," said Liz. "After the genetic tests, the doctor said, 'This will never happen to you again in 1,000 years.'"

Still, the experience has given the Grants a unique perspective as they have been to some of the best pediatric hospitals in the West.

"We saw a child that was born with no nostrils," said Liz. "Another was missing a valve in his heart, and another whose esophagus wasn't attached to her stomach.

"What's really amazing to me is how many babies are born with no issues. Perfectly healthy babies with no complications whatsoever."

Financial strain

Ben, a math teacher at River Valley High School in Bullhead City, couldn't afford to put his family on his insurance because the monthly premium would eat up more than a full paycheck.

The plan was to pay for Aurelia's birth in the same manner they paid for Alex's: Cash payments and credit cards.

But the special care Aurelia required, and will continue to require, quickly pushed medical costs into the stratosphere.

Fortunately, both Grants were able to get a one-year hardship deferment on their student loans. The savings allowed Ben to purchase insurance.

Friends and coworkers helped the family raise funds. People made sure they had a Christmas.

"Churches we don't belong to wanted to help out," said Liz. "The mailman came to the door with a package and asked me, 'How's your baby?' "

But all the rummage sales in the world wouldn't put a dent in the bills.

"They say an ECMO baby is a million-dollar baby and there's a very good reason why they say that," said Liz with a chuckle.

ECMO is an acronym that stands for extracorporeal membrane oxygenation, which is doctor-talk for a machine that bypasses the heart and lungs to keep a person alive.

She is off that machine. She's off the ventilator. She's off all the other machines and drugs that kept her alive until modern medicine could do its thing.

Moving on

Ben and Liz seem remarkably calm given all the drama they've been through since Oct. 30. They don't seem any more stressed than other parents would be with an infant at home.

Kathy, a retired registered nurse and Ben's mother, traveled to Kingman from Indiana on Nov. 2. The plan was to stay a month to help the family get settled after Aurelia's birth.

Six months later, she's still here, caring for Aurelia and Alex while Ben and Liz work.

"She's been a huge help," said Liz.

Neither Ben nor Liz let much get them riled up these days. Their ordeal has given them a rare insight.

"When you see your baby almost die right in front of you about half a dozen times, your priorities change," said Liz. "You learn you can handle a lot, but you also understand what's really important."

As the family gathers in the living room to pose for photos, Aurelia's eyes light up like a Christmas tree and she smiles from ear to ear, cooing as she makes deliberate eye contact with her mom, dad, brother and grandmother.

She smiles, and her family smiles with her.

Related Stories:
• Kingman newborn struggles against rare birth condition

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Reader Comments

Posted: Friday, May 3, 2013
Article comment by: Marybeth Montgomery

God Bless You All!
So glad to hear after all she has been through, that she is thriving!

Posted: Friday, May 3, 2013
Article comment by: Shannon Huff

I'm so thrilled for the grant family so excited for Aurelia's
Progress love u guys

Posted: Friday, May 3, 2013
Article comment by: Amber Lee

What an amazing story. I am so glad this little girl is fighting and growing. I am thankful she is still in your life and you instead of dwelling on the hardship you guys inevitably deal with, you guys have changed your outlook on life and truly don't day anything for granted. Your family is in my prayers. Miracles happen every day your little angel is a gift from God. I have a feeling she is going to grow up to be a very strong woman. Blessings to you all

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