Lucas Mobley / Record Searchlight A TOUCH OF LIFE: With her husband, Charles, at her side, Jennifer Davidson spends her first moment with her new son Jordan just after his birth March 10. Jordan, born with Trisomy 18, died the next day. Lucas Mobley / Record Searchlight CHOKED UP: Charles Davidson struggles to keep his composure while delivering a eulogy for his son at a memorial service. Photo courtesy of Jennifer and Charles Davidson PARTING MOMENT: Jennifer Davidson holds her son moments after his death.

Miracle in the Moments

Baby born with fatal genetic disorder clings to life for 32 hours

By Damon Arthur, Record Searchlight
April 3, 2005

Jennifer and Charles Davidson spoke softly as they stroked their son’s tiny fingers, kissed his head — and watched the clock.

They noted when Jordan William Davidson turned 5 hours old. His mother was at his side to touch her son and talk to him for the first time since he was born.

“Hi Jordan. Your momma’s here. I love you,” Jennifer said. “Someone told us we wouldn’t get to meet you, but here you are. We’re meeting you and you’re doing good.”

It was another hour and another miracle to the Davidsons.

Earlier in the day of March 10, they celebrated Jordan’s birth at 6:53 a.m. In many ways it was like so many other births that day at Mercy Medical Center in Redding.

The Davidsons’ friends, Dita and Bob LeCoe, took photos. Jordan’s mother and father were together. Jennifer’s three other sons were with her. Friends and family visited. They brought cards, flowers and laughter. They remarked how beautiful Jordan was. Jennifer’s
son, 12-year-old Zach Trowbridge, shot lots of video.

But a couple hallways away from where his mother visited with friends and recovered from the Caesarean section birth, Jordan was in the hospital’s neonatal intensive care unit, breathing with the help of a ventilator.

Jordan was born 8 1/2 weeks premature, weighing 2 pounds 6 ounces at birth. He had been born with Trisomy 18, a fatal genetic disorder.

The Davidsons knew that as soon as Jordan was born the countdown began. The chances of his survival grew less and less as time went by.

“Every single hour — 7:53, 8:53 — it was like counting years,” Jennifer said later. As the hours passed Jordan’s future grew shorter.

By March 11, the day after Jordan was born, his condition was worsening. Dr. Craig Traugott told Charles to come to the hospital by 1 p.m. Jordan could not breathe on his own. He was suffering “multiple system failure,” that included his heart and kidneys, Charles said.

“Really, his body was starting to turn against him,” Charles said. The Davidsons called family, friends and their pastor together in Jennifer’s hospital room. They took turns holding the baby and kissing him. They took photos. They prayed.

With about a dozen family and friends gathered in the hospital room, Jordan’s ventilator tube was removed. About a half hour later, at 3 p.m. on March 11, Jordan William Davidson died — 32 hours and 7 minutes after he was born.

“It was a beautiful time. It was a release. It wasn’t a hysterical crying moment. It was beautiful handing him over to God,” Charles said.

“You try to be brave. One hundred percent in my heart, no regrets, but it’s still hard to say goodbye. There’s no easy way to lose a baby,” Jennifer said.

Three months earlier they were told about trisomy 18, which causes serious birth defects due to an extra 18th chromosome. They had decided then that they wanted to give Jordan a chance to live as long as possible. But they did not want to prolong his suffering once he became gravely ill.

“That decision was made two to three weeks (before Jordan was born). We decided we wanted to give him every chance, but we didn’t want to do extreme measures to save his life,” Charles said.

At least half of all fetuses with the disorder die before birth and about 90 percent of children with trisomy 18 die before their first birthday. Children who survive longer live with serious developmental disabilities.

Possible defects in infants include heart and kidney damage, small head, brain and nervous system problems, an opening in the abdomen, cleft lip and small or missing thumbs.

“It is a defective fetus that has no ability to live outside of the womb,” said Victoria Miller, founder and executive director of the Trisomy 18 Foundation, which operates a Web site, trisomy18support.org. The foundation offers information and sources of support to parents of children with the condition.

“There isn’t any right answer and there isn’t any way out of it,” Miller said. “Do you want to get hit with a brick or with a rock?”

Her son, Isaac, was born with trisomy 18. He died in March 2001, 11 days after he was born. One in 3,000 children are born with Trisomy 18, Miller said. While few have heard of the condition, it is more common than muscular dystrophy and cystic fibrosis, she said.

Parents are often unsure how to react when they find out their child has Trisomy 18, Miller said.

Jennifer and Charles said they were urged to terminate the pregnancy. Their doctor told them she would provide no further followup care, they said. They were devastated.

“The very first thing we did was take his gifts from under the Christmas tree,” Charles said. “We went through a long period of crying.”

In four months they had gone from excited and expectant newlyweds to facing the likelihood of a stillborn child or the death of their infant son.

Charles and Jennifer, both 36, got married on May 27 last year. They looked forward to having children together even before their wedding. Charles especially wanted to be a father. Jennifer has three sons from a previous marriage, Chris Trowbridge, 16, Ben Trowbridge, 14, and Zach, 12.

Jennifer found out she was pregnant in August. They were excited and began planning. They got a crib and set it up in a small room adjacent to the master bedroom in their Redding home. They bought baby clothes and receiving blankets. They took photos of Jennifer with her tummy sticking out.

In November, Jennifer’s alpha fetal protein test indicated a one in 19 chance Jordan had Tisomy 18. She had an amniocentesis test to clear up lingering uncertainty. On Dec. 20, they found out Jordan had the disorder.

Their excitement and hopes were crushed. The family struggled, said Jim Padillla, assistant pastor at Risen King Community Church in Redding.

“December 20, going into Christmas, was very, very tough,” Padilla said during a memorial service for Jordan on March 24.

They wanted Jordan to live as long as possible. But with the likelihood he would be born with serious birth defects, they had to determine at what point they would stop providing medical treatment.

Charles said they drew up a plan about how to proceed with medical treatment during and after Jordan’s birth. They did not want to take extreme measures that would prolong suffering, he said.

While the decision not to terminate the pregnancy was easy for them, accepting Jordan’s inevitable death took longer. After receiving the news about Trisomy 18 in December, their outlook changed. Instead of looking forward to spending many years watching Jordan grow, they began counting the hours and days they had left with him.

“So your expectations just change. You go from ‘I hope he grows up to be president to I hope he lives a month,'” Charles said.

“We’re never going to sign his report card. We’ll never yell at him and tell him to get off the phone,” he said.

Jennifer said she wants others to learn from her family’s experience. They urge parents of Trisomy 18 babies to find out as much as possible about the disorder and their baby’s condition.

“I want people to know that some babies can live and that every moment is a miracle. No matter what, it’s a miracle to us,” Jennifer said.

“We feel like we got our miracle. We were told he had no chance of living. It was an easy decision,” she said.

Currents editor Damon Arthur can be reached at 225-8226 or at darthur@redding.com