By Kristen Miller
DASSEL, MN With the odds against her, 5-week-old Juliet Faith Lundeen has been proving just how strong a fragile life can be when surrounded by hope and love.
From the moment Juliet Faith entered this world, parents Allison and Ryan Lundeen of Dassel have been grateful for every minute they get to spend with their precious daughter, for they know her life is in God’s hands.
Juliet, or Jules as she is most-commonly called, was born with a chromosomal defect that was detected when Allison was 26 weeks pregnant.
“You never think it’s going to happen to you,” Ryan said, who is a 2000 Dassel-Cokato graduate and now a father of three.
It was during Allison’s 20-week ultrasound when a shadow was detected on the baby’s lip, signifying a possible cleft pallet and indicating other abnormalities.
Allison was then ordered a more in-depth ultrasound, which only confirmed the original results.
A specialist expressed strong concerns for Allison and the life she was carrying.
In addition to a cleft pallet, the ultrasound detected quite a list of abnormalities, including holes in the baby’s heart and sides of the brain that weren’t fully connecting.
All of these suggested a chromosomal defect, possibly Trisomy 18, where there is an extra chromosome created during cell division.
Two days later, an amniocentesis, a test of the fluid surrounding the fetus, confirmed it was Trisomy 18, a disorder that is deemed “incompatible with life.”
“The doctors strongly suggested we terminate the pregnancy, which was not an option for us,” Allison said, adding that she and Ryan are very much pro-life.
The medical outlook on babies with Trisomy 18 is not very hopeful, Ryan added, and there isn’t anything doctors can do to correct the disorder.
What is Trisomy 18?
Trisomy 18, also known as Edwards syndrome, is caused by an error in cell division and occurs in about one of every 2,500 pregnancies in the US, according to the Trisomy Foundation. In addition, 50 percent of the babies carried to term are stillborn, with stillbirth rates higher in males.
During conception, typically, 23 chromosomes from the father and 23 chromosomes from the mother combine to create a baby with a set of 46 chromosomes in each cell. Trisomy 18, however, occurs when a baby has three Number 18 chromosomes, instead of the normal two.
To compare, the foundation explained that babies born with Down syndrome, for example, are considered to have Trisomy 21, a third chromosome on Number 21.
Developmental issues, however, caused by Trisomy 18 are associated with medical complications that are more potentially life-threatening, especially in the early months and years of life.
It was because of these complications detected early in the pregnancy, that doctors had little faith that the Lundeens’ baby would be born alive.
It was a stressful labor for the couple since they decided against using a heart monitor, which would detect any complications the baby was having. This would cause even more stress during labor, Allison said, since the chances of her having a live birth were low. A Cesarean was also not an option because of this, Allison noted.
As a result, they didn’t know if the baby was still alive during labor.
Born a fighter
Against all odds, Juliet Faith was born Oct. 8 at 6:23 p.m., weighing 4 pounds, 11 ounces.
She wasn’t breathing at first, but with a couple of puffs of oxygen Juliet started crying, Allison explained.
As part of their birth plan, the couple decided that the baby would remain with her mother at all times, without any medical devices keeping her alive.
“We just trusted the Lord that if she made it, we were very thankful, and if she didn’t, that was the Lord’s plan,” Allison said.
Eleven hours after Juliet Faith was born, Allison and Ryan took their new baby girl home.
“We knew we wanted to come home with her as soon as possible,” Allison said.
“We didn’t want her to live off of a machine,” Ryan added.
In addition to a cleft pallet, Jules was born with club feet and her fingers permanently crossed over and curled, all signs of Trisomy 18.
Since there isn’t anything doctors can do to correct the disorder, it was decided that any surgery to correct her cleft pallet or heart was just too risky.
Instead, the family is giving Jules comfort-care hospice at home.
Allison shared how helpless her doctor felt, unable to do anything for their baby, telling them it went against everything doctors are trained to do.
Though the life expectancy is short for Trisomy 18 babies, Allison said that some do live well into their teens, and the odds are greater for girls. However, the family is just trying to live day by day.
“The challenge is not knowing,” Allison said.
“We’ve said goodbye a few times,” Allison said, explaining that Jules has stopped breathing a couple of times due to apnea, a common condition among Trisomy 18 babies. Her breathing is also very shallow.
Eating has been a challenge for Juliet, due to the cleft pallet.
Since her cleft pallet is so deep, nearly stretching to her nasal cavity, a feeding tube would be difficult and even dangerous. If she spit up, it could go into her lungs, Allison explained.
Instead, she is fed breast milk with a syringe under her tongue and now she “eats like a champ,” Allison said.
Because she has been able to breathe on her own despite her respiratory complications, Jules has been considered an absolute miracle.
“She’s a little miracle baby,” Ryan said, adding that she is a peaceful baby with normal baby actions. “She eats, sleeps, and poops,” he said with a smile.
After Juliet’s first-week check-up, the doctor held her and cried because she was so amazed Juliet was still alive, Allison said.
In this whole journey, the couple has found that Jules has already served a huge purpose in this world and has strengthened their faith in God and the plan He has for them.
“We know the Lord chose us for her, and her for us,” Allison said.
The couple even chose the name Faith because “We knew we would have to live by faith through this whole journey,” Allison said.
Jules has also taught them just how precious every life is.
“For us, the big thing is, we aren’t supposed to decide our baby’s fate,” Allison said. “I think we need to be a voice for them since they don’t have one.”
“They are all God’s children, they are just lent to us,” Ryan added.
Making an impact
Jules is making quite the impact outside of her home, as well.
As a stay-at-home mother of three, Allison has been keeping a blog for the past two years titled, Proverbs 31 Girl.
“It’s a way for me to share my home decor on a budget . . . and my heart,” said the former Cokato Elementary School teacher.
The blog has also been a way for her to share Juliet’s story to the rest of the world.
Since she has been born, the blog has received 30,000 unique visitors.
“People have really clung to her story,” she said.
Jules’ story is also on Facebook, and the page has 2,700 followers.
Through these sites, the family has received a lot of support and prayer and have been able to keep family members out-of-state updated.
This is also an opportunity for them to hear stories of other babies who have either had or are facing the same diagnosis as Jules.
“The Lord’s been able to use my story to support others,” Allison said, sharing that she was just contacted by a pregnant mother who just learned at 20 weeks that her son is a Trisomy 18 baby, as well.
In addition to the support they receive via social media, the Lundeens are also gracious for the support from their church family at Cornerstone Church in Litchfield.
“We’re so blessed by the church,” she said, adding the church members have provided three meals a week since the family returned from the hospital.
A dedication of Jules is planned for December and the family remains hopeful. “She’s proved everybody wrong so far,” Ryan said.
To follow the Lundeen family and Jules, visit www.proverbs31girl.com or search Facebook for Proverbs 31 Girl.