Broken Hearts
Mya Joy Brahler of Grove City was born on Dec. 14, 2005, weighing just 5 pounds, 3 ounces.
All tests indicated she was a normal healthy baby. But when she failed to thrive, her pediatrician wanted to weigh her every three days.
When Mya's mother, Christa, took her for a three-week weight check, her doctor said Mya had a murmur caused by a significant hole in her heart.
"He sat directly in front of me, looked in my eyes and said, 'Mrs. Brahler, you need to get to the emergency room at Children's Hospital as soon as possible,'" Brahler recalls.
Brahler was so devastated that after the doctor left the office, she sat there and cried as her 3-year-old son, Luke, watched.
Mya is among the 45,000 American children born each year with congenital heart defects, many of them in the Butler area.
The defects result from the failure of the heart or major blood vessel to mature normally during gestation.Mya required surgery for a VSD, or ventricular septal defect. Dr. Peter Wearden, a cardio thoracic surgeon at Children's Hospital in Pittsburgh who helped to perform Mya's surgery, explained it."The VSD is certainly the most common congenital heart defect that requires surgery. We all have one chamber to our heart when we're born. As we develop, the heart pulls and twists until it partitions itself into two primary chambers."If there is a hole there, the blood that is supposed to go to the body goes to the lungs, making it difficult to breath and eat," he said.After her diagnosis, Mya was prescribed medication for two weeks to help her gain weight for the surgery. But before the two weeks was up, she ended up at the ER in mild congestive heart failure.After five grueling hours in the waiting room, Brahler learned that "through the grace of God" the surgery was successful."A Dacron patch, a polyester material is what we used to close Mya's hole," said Wearden.And contrary to what some concerned parents might fear, the hole does not grow. The rest of the heart does, and the body forms a protective lining over the patch."If you looked at Mya's heart now, you wouldn't even see it," Wearden said.But like many heart babies, Mya developed complications that were delaying her progress.At 8 months, she still wasn't eating much due to acid reflux, and she had developed torticollis, or twisted neck, a condition that caused her to tilt her head to one side in an effort to comfort herself.She could not sit up on her own and didn't like to lie on her stomach with her head raised, a position necessary to develop neck muscles.
But in August, Brahler found help in the Mercer County Behavioral Health Commission, which sent a team to evaluate Mya.Because she was younger than 3 with a 25 percent delay in development, she qualified for its early intervention program. Mya began working in her home once a week with physical therapist Mike Yute of Grove City."Kids with acid reflux and other health problems don't want to move as much, don't want belly time or get enough stimulation while they are in the hospital or in bed at home," he said. His ultimate goal was to get Mya to walk on her own.Last Friday, he propped her up on an exercise ball and had her throw and kick a smaller ball to help build her muscles. "Go ahead pretty girl," said Yute, as he tossed a yellow tennis ball to the baby. "You can do it!""Eighty to 90 percent are going to improve and walk eventually, but some have more severe problems and don't get better. That's heartbreaking," said Yute, whose clients also include children with downs syndrome and cerebral palsy.For about nine months, Mya also attended the feeding clinic at The Children's Institute in Squirrel Hill. A nutritionist, speech therapist and pediatrician there made recommendations to Brahler for nutritional supplements and feeding techniques to help Mya gain weight. She graduated from that program about a month ago."The hardest thing is saying goodbye," said Yute. "You get pretty attached."He will re-evaluate Mya, like all children in the early intervention program, after one year. But she may be graduating early.On Monday, at the age of 16 months, she took her first step.
Melanie Ansell of Sandy Lake, Mercer County, describes her family as "very blessed," though the health record of her 1-year-old Colton reads more like that of a 70-year-old.He has a stent in his heart, platinum coils installed in his arteries, pulmonary hypertension, and he is on continuous oxygen. He's had emphysema, open heart surgery and is homebound six months out of the year to avoid infection. Most of his problems stem from a congenital heart defect."We are very blessed and so fortunate to have him at all," Ansell said. "Years ago Colton would not have made it."When she was six months pregnant, Ansell went to United Community Hospital, now Grove City Medical Center, in Grove City, thinking she had the flu."They were going to run tests for a urinary tract infection, but decided I was in labor and called for a LifeFlight to Magee-Women's Hospital in Pittsburgh," she said.But it was too late. Colton was born 40 minutes later, before the helicopter arrived. Colton and his father, Brady, took the helicopter to Magee while Melanie stayed in Grove City. Colton had "bad lungs" and was only 2 pounds, 6 ounces. Things were scary but going fine, Melanie Ansell said.Then she learned that Colton had tetralogy of fallot with pulmonary atresia — or TOF-PA — a serious heart defect."It was the first time in my life that I felt like I was going to faint," she said.Like most parents, the Ansells wanted to know why. But Wearden, who also did Colton's surgery, told them they may never know. They would have to take it up with "the big guy upstairs."Wearden explained that tetralogy of fallot has four components: a VSD, or hole in the heart; narrowing of the pulmonary valve; right ventricular hypertrophy — it works harder to pump against the obstructed outflow tract; and an overriding aorta, in which the heart twists a little too far and overrides the hole.On July 10, after growing for four months in the hospital, Colton pulled through his first surgery and was released in 10 days rather than the anticipated months.Ansell counts the staff at Children's Hospital, Wearden and Dr. Victor Morell — who helped to perform Colton's surgery and most heart surgeries at Children's — as blessings too."They are so dedicated. They will sit at our kids' bedsides for 24 hours to make sure our babies pull through the night. We are so fortunate to have a top-rate facility and top surgeons in Pittsburgh."Finally home, Colton is seen once a week by a speech therapist for feeding, an occupational therapist for fine motor skills and a physical therapist for gross motor skills. All of them work in Mercer County Behavioral Health's early intervention program.On Wednesday, speech therapist Nikki Frost spoon-fed Colton Stage 3 oatmeal with apples for the first time while he played with a bowlful of baby spoons."I'm trying to advance him from Stage 2 smooth foods to Stage 3 lumpy."Though Colton has four teeth, he gagged a little on the new texture. But not nearly as much as he did with his first solids."He was intubated through his mouth off and on for several months, and many babies who have that are averse to food afterwards. … He would gag and throw up," Frost explained, as Colton's mother intercepted his 3-year-old brother, Jensen, who attempted to slingshot one of the baby spoons across the room."Jensen has been great considering all the attention his brother gets. He's very proud of his little brother and loves him very much," said Ansell.She manages to care for the two boys while working a 40-hour week at the U.S. Investigations Services Grove City annex, counting her employer's flexibility among her blessings."My boss, Ron Rummell, said 'You didn't go to life. It came to you and we're going to help you get through it.'""His support has made a huge difference," she said of his willingness to accommodate her scheduling needs.Some of her fellow employees donated their vacation time so that Ansell could tend to her son's needs.She also gets support from her family and from other local mothers of CHD babies in a group formed by Buffy Storm of Slippery Rock, whose son Tony has the same defect as Colton."Buffy's son Tony was an honoree for Butler County American Heart Association's Heart Walk last year. Colton is this year's honoree for Mercer County," Ansell said.Today, Colton looks healthy, weighs more than 17 pounds and is active to the point that he gets tangled in the tube for his oxygen tank. But his battle is not over."His prognosis is very good, very treatable. There can be anywhere from two to five open hearts remaining, and he'll need constant monitoring until adulthood," Ansell said.She remains hopeful, despite the fact that though one in 125 babies is born with a CHD, funding for the disease is only one penny compared to each dollar spent for cancer research."More funding is desperately needed for research to make strides in development for our CHD kids," Ansell said. "Who knows what the next technological advancement may be, maybe one that would aid in my child's life or the life of another."
Some battles, medical and otherwise, are over for Mike Miller, 27, of Karns City.When he was just 12 hours old, Miller's mother learned that his pulmonary artery and aorta were reversed, resulting in an abnormal flow of blood. "They called me a 'blue baby,'" said Miller."He couldn't eat or drink before the surgery because he had oxygen in his mouth," said his mother, Diane Miller. But at that time she knew of no early intervention or support groups."I didn't really have anyone to talk to. We just sort of stood on our own. Of course, Children's Hospital was very supportive," she said.Miller didn't have surgery until he was 18 months old because the hospital did not have the technology or facilities to operate on newborns."He came through the surgery with flying colors," Diane Miller said.But Mike Miller had to give up some of his dreams. "As a kid I always wanted to play sports, but they directed me to play only certain sports and positions. I couldn't go to the military either because I was not able. That was heartbreaking for me," he said.He required no further surgery, but had two catheterizations and some follow-up."I was told to see the doctor every year till I was 7, and every other year till I die," said Miller. But he has not seen the doctor since he was 18 years old."When he turned 18, they turned us down. He couldn't get health (insurance)," said Diane Miller.But fortunately, Miller got married last September and will be able to get coverage through his wife's insurance.Though his type of congenital heart disease can be hereditary, Miller is not worried. "My daughter is 6. The day she was born we were all on edge to see if she would have my problems. But she's 100 percent healthy. My wife has a little girl too, and that's enough for us."Many advancements have been made in pediatric heart care at Children's Hospital since Miller had his surgery in 1981. Children's built the first cardiac intensive care unit in the region in 2003, making newborns like Colton and Mya candidates for open heart surgery. Because of these strides, the tears of their mothers have turned to joy.Brahler will never forget that day in the doctor's office when her tears flowed as her son watched. The toddler, mimicking the doctor, walked up, eye level to his mother and said, "Mommy, I have to tell you something. You'd better not pout. You'd better not cry. Santa Claus is coming to town." In a way, Santa did come … and brought his sister the gift of life.
