GLASGOW — If there was ever a miracle child born to this world, Ava Grace Milam, 3-1/2, is that child.

She is only one of three children with a dangerous medical condition – fetal stroke – who is known to have survived beyond infancy, according to the Yale School of Medicine, her mother said.

Tami Milam, 33, spoke hopefully but pragmatically about her daughter’s chances for continued life and ongoing development as she cradled Ava in her arms while sitting in the living room the family’s home in Barren County recently.

The beautiful dark-haired, dark-eyed girl peered out from her mother’s embrace and smiled a smile to melt even the hardest of hearts while Tami told the story of her daughter’s struggles to live and her own battle with the medical establishment to find the best treatment possible for a child who doctors advised would not even survive birth.

When she was 22 weeks pregnant, Tami went for a regular OB visit with Dr. George Allen in Glasgow, who performed an ultrasound. The test revealed spots on the baby’s heart. Allen sent the expectant mother and her husband, Phillip Milam, to Central Baptist Hospital in Lexington for further testing.

As the doctors questioned Tami about possible problems with her other children, fear began to creep in.

“After the fifth question worded in different ways of ‘Is there anything wrong with your other two children?’ we knew something wasn’t right and we knew that it was bad. We got put in that little room with the all the boxes of tissues and medical journals,” she said.

She will never forget that date, Aug. 16, 2006, Tami said. The doctors told them there was good news and bad news. While the baby’s heart was “great,” they had found a blood clot the size of an adult’s thumbnail in the temporal lobe of the brain of the 24-week fetus.

The couple was advised by the physicians to terminate the pregnancy and  were told it would be better for everyone because in all likelihood the baby would not survive to full term. Tami didn’t hesitate in her answer.

“I told them, ‘Whether it be one second, one hour, one day, 30 years, it didn’t matter. She’ll know me as her mother. She’ll know my touch,’” she said.

Tami and Phillip were tested for a number of genetic conditions as the medical experts tried to determine the exact cause of the baby’s problems. There were some misdiagnoses along the way, one of which left Tami filled with guilt.

“I spent three weeks with me thinking I was killing my baby – that my body was rejecting her,” she said.

Following all the tests, the only conclusion the doctors could give the Milams as to why this happened to their unborn child was that it was a “fluke.”

“After we found out, the pregnancy was hell,” Tami said. “Every single twitch I felt I imagined the worst.”

The couple decided to transfer Tami’s medical care to the University of Louisville Hospital to have a shorter travel distance when the time came to deliver the baby.

“Lexington was three hours away. I knew if I went into labor, (the hospital in) Glasgow couldn’t handle it,” she said.

Ava was born by Cesarean section five weeks early on Nov. 11, 2006. She was the size of a 7-1/2 month fetus weighing only 3 pounds, 14-1/2 ounces and measuring 15-3/4 inches long. Her head circumference was 11-3/4 inches.

“She was smaller than a 16-inch baby doll,” Tami said.

There were 30 specialists in the operating room when the C-section was performed and Ava was whisked away immediately.

“We were told right before she was born, that she would never walk. She would never talk. She would never have a suck-swallow-breathe reflex, so she would never breastfeed nor suck a bottle. She would never track. She would never see, would never acknowledge, show emotion, never be able to interact socially in any way, shape or form,” Tami said.

But Ava fooled the experts and turned out be a fighter from the very beginning.

“She had no preemie problems, no apnea, no problems whatsoever other than being very small. It was unbelieveable,” Tami said. “She had an Apgar of 8.”

An Apgar score is a way of assessing the health of a newborn. Ten is the highest score.

When Ava was 2 days old, Tami breastfed her. When she was 5 days old, she lifted her head up and turned it from side to side while lying on her belly.

But there was still heart-wrenching news to come. A pediatric neurologist from U of L was called in to take an MRI (Magnetic Resonance Imaging) of Ava’s brain. He told the Milams that their little girl’s brain had holes in every lobe, some as far down as the MRI could scan.

“We couldn’t have imagined what we saw – just pockets of black on the scan. Thirty percent of her brain was missing when she was born. It looked like Swiss cheese,” Tami said.

Even though Ava had overcome so much in the first five days of her life, the neurologist still advised the couple not try to care for her on their own.

“He was telling us she couldn’t do this, couldn’t do that and it would be best to institutionalize her,” Tami said. “I got mad. This was my baby they were talking about, not some lab rat. This was my child.”

Tami said she had wanted to save and store Ava’s umbilical cord blood for future use, but was advised not to waste her money and to save the $2,600 it would cost for the baby’s funeral expenses. The medical professionals gave her no hope, so she went along with their recommendation.

“There was nothing we could do, according to them, that would make sure she survived,” Tami said. “There was no life expectancy for her at all. She was not supposed to leave the hospital.”

Ava was in the Neonatal Intensive Care Unit (NICU) at U of L Hospital for 13 days. Afterward, the Milams found out she had also suffered a Grade 4 brain bleed or hemorrhage while she was in the hospital, which would have probably killed any adult suffering such an event.

“When she had the brain bleed, hers was like a bullet ricochet. When it burst, blood went everywhere,” Tami said.

After she was taken home, there were countless hospitalizations for Ava for a variety of medical problems including microcephaly, or a small head, which means her brain is not developing as it should.

“We were told her brain would not grow and that would be what would kill her,” Tami said.

Ava’s mom has done exhaustive research on her daughter’s condition, which was finally determined to be fetal stroke, but she credits God, not anything she did, with helping to find answers.

When Ava was about 7 months old in 2007, Tami’s brother had a stroke.

“For three weeks, I typed in ‘treatment for stroke’ (on the computer) and got nothing. My brother survived a massive stroke. My daughter survived an extremely massive stroke, but I couldn’t fix it. I gave it back to God and asked him to point me in the right direction,” she said. “I typed in the same word for three weeks and then suddenly up popped ‘donated umbilical stem cell treatments.’ Since then, that’s been our world.”

Ava received her first stem cell treatment on Nov. 7, 2008, right before she turned 2. Donated stem cells were used because the Milams had been persuaded not to save their daughter’s cord blood.

“That’s the last time I listened to a doctor,” Tami said.

The treatment was completed in Peru because the Food and Drug Administration (FDA) has not given approval for the procedure in the United States yet. Up until that time, Ava was like a 2-year-old newborn. She couldn’t even roll over. A day after the treatment there were improvements.

“For the first time in her life, I could bend her foot without feeling like I was going to break it, Tami said. “Now after a year and a half, she’s taking steps, showing emotion. We went to Peru in 2008, sure it was going to help her and it did drastically.”

In March of this year, the Milams took Ava to a clinic in Florida to receive treatment using her own blood stem cells, which has helped improve her physical condition by 50 percent.

“After the stem cell treatment, her legs relaxed and opened up, her hands are open all the time. She’s grasping at things,” Tami said.

Ava has improved so much she now goes to school at North Jackson Elementary with her sister, Anna, 9, and her brother, Alex, almost 5. She began attending preschool last November in both special needs and mainstream classes. She tested as having age-appropriate cognition and loves school, according to Tami.

“She’s a joy to have. She’s always smiling,” said Anthony Frazier, NJE principal. “The students hug on her and pat her on the hands. The kids have really taken up with her and she has a special place in the hearts of the kids here.”

According to Tami, Ava has everyone wrapped around her little finger at the school including the principal. She even had five boyfriends this past school year.

The family is planning another trip to Peru later this year for the next stem cell treatment for Ava and the school is helping in an effort to raise funds for the trip. A benefit is planned for Saturday, July 17, at NJE to raise money for the $17,000 cost of treatment. That amount doesn’t include the $3,000-$3,500 that will be needed for air fare, but according to Tami, the expense is necessary.

“There’s no cure, no quick fix. This is a repeated thing for us. This actually is the only thing that will save her life, the only thing that has saved her life, the only thing that’s made a difference,” she said.

On July 19, Ava will undergo the first MRI she has had in 2-1/2 years to check the progress her brain is making.

“We want to see if her brain, like her body is regenerating, growing and filling in those pockets,” Tami said.

Last year, 2009, was a challenging year for the family. Ava was hospitalized 19 times with everything from pneumonia and strep throat to a tonsillectomy. Tami became terrified she was going to lose her daughter.

“I knew she wasn’t going to make it this past winter if we didn’t do something. She was weakened. I actually planned her funeral while I had the mental capacity to do it – all by myself, quietly, all written down. I knew it was coming and I had to let her go,” she said.

But then in November Ava was prescribed a new allergy medication and her condition turned around. She’s had barely a sniffle since then, Tami said.

For a child who had no expectancy to live, Ava has proven the medical world wrong time and again and she has a tenacious mother who will fight for her until the end.

“I will stop (trying) when she stops. I will stop fighting and pushing and doing everything possible for her when she stops. When she gives up, I will have to let her go,” Tami said.