Couple speaks out on twins syndrome

Charlie and Britney Wheeler of Kalispell joke about living under house arrest with their 4-month-old twin boys Davin and Easton — but they really couldn’t be happier to have a new family around their Christmas tree.

But for amazing medical advances, Charlie and Britney likely would have spent the holiday season grieving the loss of one or both of their sons as a result of twin-to-twin transfusion syndrome. They want to get an important message out to others.

“Anyone pregnant with identical twins (or triplets) is at risk,” Britney said. “Between 15 and 20 percent get twin-to-twin transfusion syndrome.”

The couple wants to provide the gift of knowledge to others about this condition that can develop when two babies share the same placenta. According to Charlie, the condition pops up randomly in the population of pregnant women.

“It’s not genetic and there’s no environmental causes,” he said. “It just happens.”

Charlie, a tattoo artist, and Britney, a cosmetologist, weren’t very surprised when they found out six weeks into her pregnancy that she was having twins. Every generation of her father’s family had twins.

Before she knew for sure, Britney said she stressed about the financial impact if her family history struck again. Then she read a devotional about giving her worries to God “and He will give you multiple blessings.”

Her attitude became one of hope for multiple babies instead of dread. Britney counted their blessings, such as having medical insurance coverage for the birth.

“I was going to be so upset if there was only one,” she said.

The ultrasound revealed identical twins sharing one placenta. All went well until her 20th-week checkup on May 5 with Dr. Gregory Utter, a perinatologist who deals with high-risk pregnancies.

He told the couple that she had the very beginnings of twin-to-twin transfusion syndrome in which one twin, the recipient, receives too much blood and nutrition from the other “donor” baby in their shared placenta.

“He said, ‘You technically have it. Everything looks OK but you need to have an ultrasound every week,’” Britney recalled.

After hearing about Britney’s condition, her mother, Erin Gilbert, jumped on the Internet to learn more. When she found www.tttsfoundation.org, the Web site of the Twin to Twin Transfusion Syndrome Foundation, alarm bells sounded.

“I could see all the blogs with people losing babies daily,” Gilbert said. “I didn’t know it could be so severe.”

Each baby may develop fatal problems from too much or too little nutrition and blood.

Wondering how to bring this up to Britney, her mother called Mary Slaman-Forsythe, the woman who started the foundation after losing one of her own twins in the 1980s. Gilbert learned more about the condition and the laser surgery that makes all the difference.

With this knowledge, Gilbert worked with her daughter and Charlie to research the hospitals that offer the surgery and develop a plan of action if the condition got worse. They were all glad they had the knowledge ahead of time.

“Looking back, I can’t believe how quickly it got so grave,” Gilbert said.

At 23 weeks, Britney’s ultrasound showed a considerable imbalance in fluid between the babies. She had another major sign of the syndrome, a huge distended belly.

“I was measuring 44 weeks and I was only 23,” she said.

 Not long after that appointment, Britney started having contractions and ended up on bed rest and hospitalized in Missoula. After four days, Utter sent her to Seattle to see specialists in laser surgery.

Dr. Martin Walker and Dr. Bettina Paek at Evergreen Hospital Medical Center are two of a very limited number of specialists in fetoscopic laser photocoagulation, a surgery performed in utero to correct the balance of the blood and nutrition between the twins. She went in at 10 a.m. on June 2 and had a two- to three-hour ultrasound.

Britney said the imaging showed that one baby was nearly “shrink-wrapped” in its amniotic sack. Her surgery was scheduled for 1 p.m. that day.

As Charlie rushed to Seattle, Britney and her mother prayed. Without the surgery, she faced a 80 to 90 percent chance of losing both twins. With surgery, the survival odds improved to 90 percent for one and 60 to 70 percent for the other.

“I was really scared,” Britney said. “But I knew I was in the best hands I could be in.”

 During the hour-long surgery, the physicians removed about three liters of fluids. Britney, Charlie and her mother had to wait 24 hours to find out if both boys survived the surgery.

“The next morning I had an ultrasound and both babies looked good,” she said. “We’re going to celebrate every June 2 as a holiday. That’s the day the boys’ lives were saved.”

They returned to Kalispell three days later and resumed weekly appointments with Utter. On Aug. 9 at 33-and-a-half weeks, Britney’s water broke at 3:45 a.m. Davin and Easton were born by Cesarean section at 7:38 and 7:39 a.m.

“They looked great,” Charlie said.

The babies were 5 pounds, 5 ounces, and 5 pounds, 13 ounces.

Two days later, Davin was life-flighted to Missoula after developing pulmonary hypertension — high-blood pressure in the lungs.

Charlie and his dad rushed to be by his side while Britney remained in recovery at the hospital tending to Easton. When he observed the activity at the hospital around Davin, Charlie assumed the baby was dying or dead.

The doctors told Britney that Davin’s condition had a high mortality rate. When they told her his lungs were sticking together, she didn’t know that a person’s lungs can regenerate up to age 16.

She asked to be released early from Kalispell Regional Medical Center to go to Missoula.

“I thought I was going to say goodbye,” Britney said.

Davin was heavily sedated and hooked up to an oscillating ventilator that made him “vibrate like a hummingbird.” The staff told them he was the sickest infant in the neonatal intensive care unit.

For 10 days, Charlie and Britney were like ships passing in the night as they split themselves between the two babies. Their church, the Christian Center, activated prayer chains around the world and special friends spent hours sitting by Easton’s side as the parents traveled between the babies.

“There were so many people backing us up that I wasn’t an emotional wreck,” Britney said.

After it was all over, she said they sometimes cry as they talk about what they went through. Charlie put his arm around her shoulders and gave her a hug.

“You were a rock star,” he said. “The NICU staff at both hospitals were incredible.”

Miraculously, Davin rallied and got well enough to return to Kalispell Regional Medical Center neonatal intensive care unit. When they were 12 days old, Britney finally could hold them together and the twins were able to share a bed.

After spending four weeks and a day at the hospital, the twins  went home on Sept. 7, Charlie’s 27th birthday.

“It was the best birthday present ever,” he said.

Their pediatrician, Dr. Lynn Dykstra, handed down the sentence of house arrest through April for the twins to avoid catching viruses with passes only to go to and from the doctor’s office. Charlie and Britney douse themselves, visitors and the house with sanitizer between baby feedings and diaper changes.

“At their last appointment, Dr. Dykstra said they were doing phenomenally,” Charlie said. “They’re ahead of where she expected them to be.”

With one baby each in their arms, the new mom and dad radiate comfort and joy as they cuddled their sleepy twins. They want to share their battle with twin-to-twin transfusion syndrome to raise awareness of the condition that claims too many babies.

“If you find out you’re having twins, ask is there’s one or two placentas,” Charlie said. “Start researching TTTS. It can happen to anyone.”

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