A Navajo family is currently seeking donations for financial assistance as their daughter undergoes a six- to eight-month treatment at the Primary Children’s Hospital in Salt Lake City for a birth defect.
In a heartfelt video posted on Facebook, Brandon Deschene of Red Mesa shows his daughter’s current situation, laying in a hospital bed and attached to a number of tubes as the family awaits surgery. Despite the circumstances, baby Lanaya and her parents smile as they try to make the best of the situation.
“We’re here night and day from day one, watching her grow everyday,” Brandon says in the video. “When times are needed, cry with her, show her that we’re there. And the best thing that I’ve ever shown my daughter is comfort.”
It’s a situation that no parent wishes to experience and one the Deschene family never would have expected. During a first trimester health screening, the family learned about a health complication their child faced: gastroschisis.
Gastroschisis, which affects more than 1,800 babies each year, is a birth defect in which the muscles of the abdominal wall do not fully form during pregnancy. This causes a small hole to develop near the belly button and the intestines protrude outside the body.
Gastroschisis is treated with surgery sometime after birth, which places the child’s intestines back into the abdomen. However, before surgery, the organs are slowly repaired to prevent further trauma and the healing process typically takes an average of six months.
One of the primary issues that develops from this defect is that the intestines’ exposure to the amniotic fluid irritates the organs, which can cause swelling, twisting, or a shortening of the intestines. Following birth, this irritation can also cause problems with the feeding and digestion process, as well as how well the child absorbs nutrients.
For the most part, the cause for gastroschisis remains unknown. Some researchers have pointed to genetics, environmental factors, and a disruption to the blood supply but it is still unknown how these contribute to the defect. Additionally, instances of the defect have increased in recent years.
As for the Deschene family, this diagnosis came as a surprise.
“This is the first time anyone in my family has ever seen this so it really affected my family,” Brandon said. “We’ve known about it since the second month of pregnancy and we prepared as much as we could but we didn’t know it was going to be this difficult.”
The family is currently two weeks into the process as they wait for the intestines to heal and surgery to begin. Following that, their baby Lanaya will go through a special feeding process in the hospital to ensure she is able to digest food and absorb the nutrients properly. The doctors have advised that overall this healing process can involve a six- to eight-month hospital stay.
“Otherwise, she’s a healthy baby,” said Brandon. “She was full-term, it’s just her intestines.”
In the meantime, their lives have come to a standstill. The young couple canceled their apartment lease, placed their belongings in storage and relocated from Saint George to Salt Lake City, Utah as their daughter began treatment at the Primary Children’s Hospital. Brandon left his job and his wife, Kirstin who is a Gates Millennium scholar, temporarily put her studies on hold for the semester in order to be with their first child.
The parents spend close to 13 hours every day with Lanaya in the primary care unit until they have to leave at 11 p.m. It’s difficult, her mother said, and they cherish the waking moments they have together.
“As new parents, we watch her closely and assess every move she makes,” Kirstin said. “Whenever she opens her eyes, we have our moments of laughter and sometimes we cry because of how beautiful she is when she seems to study who we are.”
“We sit at her bedside every day, singing to her and showing her comfort,” Brandon said.
This also means that although the expense of their daughter’s treatment is covered, their own stay is not. Despite not working, the family still needs to pay bills, purchase food, and cover other basic expenses.
At first, they were concerned about how to go about doing this until a hospital social worker suggested setting up a GoFundMe account. Within two days of setting up the account and posting a video to their personal pages, they have received just over $3,000 in donations from 58 individuals. The family’s goal is to raise $15,000 in order to fully fund up to eight months of their stay so they can continue to attend to their daughter daily.
But perhaps the most touching and encouraging part of this whole ordeal is learning how much strength and determination little Lanaya has at such a young age.
“The moment she was born, she didn’t come out crying,” Kirstin said. “Instead, she was coughing and very calmly looked around the room. Through everything she’s been through up to this point, she has shown us that she has a very high pain tolerance. She rarely cries. When she’s in pain, she’ll scrunch up her face, tighten her fists, and calms herself down.”
To assist the family, visit their GoFundMe page at www.gofundme.com/2uqaavfu to make a donation.