Mother's dream about baby proves prophetic

Amber Thornton, 26, had a recurring nightmare about her unborn baby's face.

"Around my 12th week of pregnancy, I started having these dreams that she actually had cleft lip and palate," Amber recalled. "Of all the deformities that she could have, this is the one I was dreaming about."

On Oct. 12, Amber and Don Lessor's healthy daughter Alexis was born with a mild cleft lip and palate, fulfilling the prophesy. The birth defect occurs when tissues forming the roof of the mouth and upper lip don't join before birth.

As soon as Amber met her beautiful new child, her tortured doubts about her ability to cope with this common congenital problem dissolved in the flood of motherly love for her infant. It was the same for Don, who was the first to see their daughter's face after she was delivered by Caesarean section at Kalispell Regional Medical Center.

When he got that first peek, he prepared his wife by saying that Alexis had a cleft lip, but it was just on the left side and her nose looked close to normal.

"Even with her cleft lip, she's still beautiful," he said.

The couple wanted to share their story because they knew very little about the defect when Amber first had the dreams. Yet each day 20 infants in the United States are born with some type of orofacial cleft, adding up to one in every 500 or 550 births.

The March of Dimes website reports the cause is not well understood. Some studies suggest genes as well as a wide range of environmental factors may play a role.

According to Amber and Don, the pregnancy was a surprise. They were engaged with no plans for adding to the family, which includes Amber's children Santiago, 10, and Katelynn, 5. Don, 48, has grown children from a prior marriage.

A pregnancy test she took prior to undergoing elective surgery had come back negative, but she later learned that she was actually a few weeks along. It was Don who first suggested that she might have conceived.

When Amber was dressing, he noticed her stomach fullness and a familiar look about her face.

"Women have that glow when they're pregnant," he said. "She definitely had that glow - that look of contentment in her eyes."

When they discovered she was with child, the couple went immediately to the emergency room in a panic that her surgery or pain medicine may have injured the fetus. Amber said the doctor told her that everything was probably OK since she didn't immediately lose the baby.

Then the dreams started. She remembers she was in the operating room in one and the baby had no face, just the cleft lip.

"I asked Dr. (John) Lavin, could we start doing more ultrasounds," Amber said. "I just had this really odd feeling about this."

It wasn't until her third appointment with high-risk pregnancy specialist Dr. Gregory Utter, when she was 28 weeks along, that he spotted what could possibly be a cleft lip on an ultrasound.

"I was very upset because everything I had heard up to that point was that everything was OK," she recalled. "I actually walked out. I was upset. When you find something like that out, well, nobody wants anything wrong with their baby."

She said she knew nothing about it and feared it meant her baby would have mental retardation as well. When she looked online, Amber saw the worst cases of uncorrected cleft lip and palate as well as the other conditions that might be associated with the defect such as club foot and heart conditions.

When she calmed down, she and Don made arrangements to go to Missoula a few days later where Utter used a higher resolution ultrasound to confirm his diagnosis. Don recalled that the doctor clearly saw the tongue go through the lip as well as images that indicated a cleft palate.

The couple was anxious to know the extent of problem.

"He said we actually can't tell you that," Amber said. "There's no way to measure."

Amber decided to follow Utter's advice to have a chromosome abnormality test of her amniotic fluid. About two weeks later, they got the results.

"A nurse called and she said it's a girl and I want to tell you everything came out negative as far as other abnormalities like Down Syndrome," she said.

Both Don and Amber were relieved at that. Amber still worried that something else was not caught and she anguished over how her little girl might get teased at school. It took her 5-year-old daughter Katelynn to bring clarity to the situation.

Don recalled that cherished moment of childhood wisdom that brought tears to their eyes.

"She comes up and hugs her mom's belly and said ‘Mommy I don't care what she looks like. She's still going to be a beautiful baby and we're still going to love her."

Amber spent days online and on the phone finding out about the corrective surgery and trying to decide where to take their daughter.

While Missoula has a clinic, Amber and Don decided to go to Seattle Children's Hospital for their ability to schedule procedures quickly and their volume of surgeries correcting cleft lip and palate.

"Some of these surgeries are time-sensitive," Don said.

On a prenatal visit to the facility on Sept. 12, they learned they needed to bring the baby quickly after birth to develop a treatment plan for her particular defects. The specialists were able to give them general information.

"She'll need two immediate procedures," Amber said. "One is at 3 to 6 months for her lip, depending on when she is feeding well, gaining weight and her white blood cell count is up."

Before she starts talking, surgeons will begin repair of her palate. As she grows, she'll need additional procedures involving her lip, palate and potentially her ears and sinuses.

"They can have surgeries until they are 21 years old," Amber said. "It involves so many things. There's like 45 different doctors and 9 are specialists."

Along with worrying about their baby, the couple had mounting concern about the financial burden. Don has no construction employment in the winter and Amber had been on bed rest and unable to operate her cleaning business.

"There was really no way we could do it financially," Amber said.

While at Seattle Children's Hospital, they learned about financial assistance through the National Craniofacial Association where they later applied and were accepted for help with travel, food and lodging. Angel Flight and Doug Betters' For the Children foundation also have offered help for Alexis.

With some of their burden lifted, the couple could do nothing more but wait for Oct. 17, the date set for her Caesarean section. That date got moved up when she had significant labor pains on Oct. 12. Don, a surveyor, made a mad rush in from a McGregor Lake road job to be on hand to cut the umbilical cord.

Amber was terrified.

"I was just so nervous and scared - I had the cold feet sweats," she said. "I was crying and everybody was just so nice and so helpful."

Assisted by Dr. Perry Birky, Lavin delivered Alexis at 2:11 p.m. She weighed in at a healthy 8 pounds, 1.2 ounces. Neonatologist Dr. Judy Rigby received the baby and continues caring for her in the neonatal intensive care unit.

"Dr. Rigby's done an amazing job," Amber said.

As expected, Alexis can't nurse efficiently and needed antibiotics to fight bacteria inhaled during the birth. She receives banked breast milk through a feeding tube attached to the umbilical cord while building up her tongue and swallow muscles with a pacifier.

She passed her neurological function and hearing tests with flying colors shortly after birth. Amber said she was really smart.

Don agreed.

"She recognizes our voices when we go in there," he said. "You could tell when she hears our voices. She's really alert."

After they take Alexis home, the couple plans to wait a week before taking her for evaluation to Seattle Children's Hospital. Her sister and brother can't wait to have her home.

Don said they thought she was beautiful when they saw her in the hospital. He remembered little Katelynn once again had the situation in hand.

"She said ‘That's not so bad. We can fix that.'"

Reporter Candace Chase may be reached at 758-4436 or by email at cchase@dailyinterlake.com.