• Cradled on her father's chest, baby Mercy gapes wide-eyed at the ceiling of her family's south Provo living room.

Her stolid demeanor could be in sheer wonder of the foreign surroundings -- the seven-month-old has spent more than half her life in a hospital room, kept company by needles and monitors. But it's tough to tell. Mercy has lost the ability to blink, a consequence of the total heart failure she experienced at three months of age.

Mercydez Haws was born with CHARGE syndrome, a complex series of birth defects that affects about one in every 10,000 babies. Its cause in her case was a random genetic mutation, and its effects vary greatly from case to case. Mercy happens to have a more severe version of the condition. She suffers from congenital brain defects, a cleft lip and palate, and complex heart disease. She is also unable to swallow, requiring her parents to suction liquid from her throat every few minutes, and doctors are beginning to suspect she could be deaf. "There's a lot that goes into CHARGE syndrome," said her mother, Ashley, 24. "In June, she got her ability to cry back. She couldn't cry."

Hope

Ashley and her husband, Nic, 27, found out they were pregnant in mid-May 2007. Having decided after three years of marriage that it was time to start a family, the couple was ecstatic when they got the news -- even if it wasn't altogether easy to bear.

"It was scary, 'cause I've never been pregnant before," Ashley said. "I was extremely sick. It was not an easy pregnancy by any means."

Nic, hoping for a boy, started calling the baby Lincoln, and Ashley played along -- though she claims she knew it was a girl from the beginning.

"That's what she says now," he joked.

At 20 weeks, an ultrasound definitively revealed Mercy's sex. It also suggested the presence of some serious health concerns. Hesitating before explaining, the doctor told the expectant parents he could see what looked like heart and brain problems, as well as a possible cleft lip.

"Of course, I broke down. I was just bawling," Ashley said. "Nobody ever expects to go to an ultrasound and hear, 'Your child is missing this,' or, 'Your child has heart complications.' "

The Haws were referred to a neonatologist at Utah Valley Regional Medical Center, who drew some amniotic fluid for testing. On the morning of Ashley's brother's wedding last September, she and Nic learned their baby probably had trisomy 13, a syndrome with a median survival age of 2.5 days.

"They didn't think she'd make it to birth; and if she did, she'd make it maybe a couple hours," Nic said.

The couple rushed from their appointment to the wedding, but weren't ready to face an onslaught of questions from concerned family -- including the groom.

"He said, 'Is everything OK?' and I just cried," she remembered. "I said, 'Don't worry about this today.' "

Following the diagnosis, Nic and Ashley discussed a new name for their troubled baby, one that would reflect their unique feelings for her. They settled on "Mercydez" -- a variation on a common name that contained their belief in God's hand in their family's situation. "Because of the complications, we decided to name her that," Nic said.

Ashley added that it has suited her well ever since.

"She's a miracle; she really is," she said. "She's just overcome everything. We just felt like it was appropriate."

Fear

From the diagnosis, a flurry of geneticists, cardiologists, plastic surgeons and other specialists entered their lives. The Haws were meeting with a new doctor every day. Somewhere along the line, one professional suggested an abortion to limit the pain the baby -- and the family -- would have to endure.

"We said, 'Absolutely not,' " Ashley said. " 'We'll carry her for as long as we can.' "

But after tests for trisomy 13 had come back negative, the treatment plan stopped.

"I was in total shock," Ashley said. She called the news a "huge relief," but said it left both the family and the doctors puzzled.

"When they don't have any answers, you don't know what to expect," she said.

So the doctors decided to treat each of Mercy's conditions independently, having no better information to go on. It wasn't until a few months after her Jan. 3 birth that she was properly diagnosed.

For the first few months of her life, Mercy lived at Primary Children's Hospital in Salt Lake. Her parents commuted every day to see her: Ashley spent most of her time there, while Nic drove back and forth between shifts as a nurse's assistant in a Provo hospice facility.

Experts continued to take blood samples from Mercy and try to diagnose her condition, but at some point, Ashley grew tired of watching her baby get stuck with needles.

"I kind of became like Mama Bear," she said.

In mid-April, doctors decided Mercy would need a feeding tube implanted into her stomach to survive. Ashley agreed to the surgery, and gave permission to draw blood beforehand, as long as her baby was unconscious. While that sample eventually led to a correct diagnosis, what happened next has led Ashley to call April 15 "the worst day of my life."

The surgery started out well enough. To make sure Mercy could breathe after the anesthesia relaxed her lungs, a breathing tube was inserted down her throat. But some time into the procedure, it became clear there was a problem: The air was leaking out of Mercy's lungs because the breathing tube was too small.

Doctors rushed to correct the problem, but struggled to insert a new tube.

"She was without oxygen for they said, like, 10 minutes," Nic said. That caused Mercy's weak heart to enter full cardiac arrest.

Wonder

Mercy narrowly survived her heart failure, but doctors weren't sure what would happen when they removed the tube that was helping her breathe. It remained in her body for another two weeks before they suggested to the Haws that it was time to make a choice: leave it in indefinitely, or take it out and see what happens.

Around that same time, news came back that Mercy had tested positive for CHARGE. One specialist was clued in by the boxy shape of her ears, a telltale sign.

Armed with more knowledge but faced with an impossible choice, the parents weren't sure what to do.

"We always joked that she wasn't going to make it out of there until she saw every doctor, every specialist," Nic said.

Facing warnings from doctors about the danger of the move, the family decided the time had come to take Mercy home for the rest of her life, however long that might be.

"They suspected that she would really not do well at all," Ashley said. They were given a prognosis of a few days.

But nearly four months later, Mercy is only showing signs of improvement.

"We pulled the tube out, and she was just the strong little girl she is," Nic said. "She's a fighter. It's still kind of touch-and-go, but she's been showing steady improvement."

Ashley prefers "princess" over "fighter." Either way, the mission she sees now is clear: Help baby Mercy to enjoy every day, never knowing whether it could be her last.

"We want to get her out and experience life and do things," she said.

The Haws have found support, in part, from a local network for families dealing with infant heart defects called Intermountain Healing Hearts.

Though it requires an entourage of medical equipment to take Mercy anywhere -- including an oxygen tank, suction machine, food pump and medications -- she gets around town pretty well. Her first trip out of the house was to the July 4 Grand Parade in Provo, and she rang in her six-month birthday in style with a family party at Jumpin Jacks in Springville.

For their part, her parents say Mercy has taught them "raw honesty" with each other. It has also given them a greater appreciation of the trials and triumphs in life.

"This child is a miracle and she's changed my life," Ashley said.

Nic agreed. "I think more than anything, it has brought us closer," he said.

Family, friends and even total strangers who have met Mercy have left the encounter with similar feelings. Ashley's twin sister, Adrienne Braun, said she never wanted a child of her own until she met Mercy.

"It was because I didn't want to dedicate my life to someone other than myself and my husband," she said. "That moment that I saw this little baby, my heart totally changed."

Adrienne said the change Mercy wrought in her was effortless -- and she's seen her "snugglebug" do the same to many others.

"You feel her love when you're holding her," she said. "A lot of people, even strangers, will comment on her spirit and how strong it is. There's no doubt that she's there, even though her body doesn't allow her to be 'normal.' "

Adrienne and some of Ashley's former co-workers are arranging a bake and yard sale to support the family through the sea of medical bills Mercy's condition has incurred. It's scheduled for 7 a.m. to 5 p.m. Saturday at the parking lot on the corner of University Parkway and Geneva Road in Orem. The family will also be accepting donations.

Ashley and Nic have started a blog to keep interested people updated on Mercy's condition. It's available online at nicandashleyhawsfamily.blogspot.com.

• Ace Stryker can be reached at 344-2556 or astryker@heraldextra.com.