"Duck Dynasty" stars Missy and Jase Robertson revealed that their deep Christian faith and tight-knit family have served as a tremendous source of strength as their daughter, Mia, has undergone numerous surgeries to correct a cleft lip and palate.
In a recent interview with Fox News, the A&E reality stars opened up about some of the challenges the family has faced over the past few years, particularly in finding the right treatment and care for Mia.
The couple found out Mia, now 11, would have a cleft lip and palate in the summer of 2003 after Missy underwent a 4-D ultrasound to see the features of her unborn daughter.
Cleft lips and palates form in the womb, resulting in a gap in the upper lip or the roof of the mouth because the tissue did not fully form during early pregnancy. Approximately 2,650 babies are born with a cleft palate in the U.S. each year, and approximately 4,440 babies are born with a cleft lip, with or without a cleft palate, according to the CDC.
"I had heard of it, but I knew nothing of the condition at all," Missy said.
"We didn't realize either the difference in just a cleft lip and a cleft palate, which doesn't sound like a whole lot, but [for] the lip you do a couple of surgeries, or one and you're good to go," Jase added. "When it involves the palate it's going to be a long journey because then even though you can repair it and form the palate as you grow, the jaw and the palate you created don't grow right."
Just a few weeks after her birth in September 2003, Mia was fitted with her first palatal appliance at the International Craniofacial Institute in Dallas, Texas.
"We were led to the International Craniofacial Institute through a mutual friend who had a child who was there, and they had found out early in their pregnancy, and they were able to do an extensive search, so we kind of just went on faith," Missy said.
"We wanted the best possible care we could find for her and this condition," she continued. "There're a lot of cosmetic surgeons in America that do cleft lip and palate procedures, but they're not at the top of their list, and we wanted someone who really takes the time to research this, and try to do their best every single day."
As reported by the Gospel Herald, Mia recently underwent a sixth procedure which required surgeons to break the top jaw from the bottom, pull it forward, re-attach it and treat the bone with growth hormones.
After the surgery, Mia was placed in the intensive care unit where she vomited blood for 12 hours before being moved to a regular hospital room to recover.
"It was definitely the hardest one in my opinion," Missy said. "It was very difficult because there is a lot of blood involved when you cut through bone."
"I had to insert a tool every day at home and turn these screw-like objects and it pulled the jaw forward a half a millimeter each time, and the last week [the doctor] said it wasn't doing it fast enough, so we had to do it three times a day for that third week," she added.
Although painful, the surgery proved successful and pushed Mia's top jaw an inch forward, which doctors hope will be enough for now as she's currently in a growth spurt.
With each surgery, Mia's appearance changes, which can be very difficult for her family to deal with.
"You need a network for support because it's very emotional and it's just hard to watch your child suffer so much, and just subtle things that people don't even think about," Jase said. "Every time she has surgery it changes the way she looks and most people from the outside looking in think 'Oh that's great,' but for the parents that's pretty traumatic, because you get used to the way your child is and when that is altered it can just become very frustrating to deal with."
While Mia has recovered from the invasive surgery, she continues to wear headgear at night and sees an orthodontist in Dallas every six weeks for a checkup.
"We're just going to try to enjoy life and let her do her gymnastics, competition cheer and be a kid, and live a normal life for a while," Missy said. "We take it little by little."
The Robertsons also started a website, MiaMoo.org, which serves as a resource for parents whose children are born with the condition.
"We tried to accumulate as much of the good information that's out there, and helpful information onto that site," Missy said. "Knowledge is power so we want to make sure that the parents are informed enough so that they can make the decision that fits best for them and their child."
The couple also started the Mia Moo Fund, a non-profit organization to help fund research for children with cleft lips and palates and minimize the financial situation of their families.
In an earlier interview, Missy said she could relate to the stress because when Mia was born, she and husband Jase were living paycheck to paycheck and she was working as well and trying to make ends meet.
"The best doctor for her, we felt, was four and a half hours away, and they didn't take our insurance so we decided to take a leap of faith and do what we thought was best for our child regardless of the money, and it was very stressful for a few years trying to pay off that debt. So we would like to alleviate that stress for these families," she explained.
Missy has written a new book titled "Blessed, Blessed ... Blessed," that documents some of the challenges the family has faced over the past few years.
"We overcame it but you know, we're all still on the journey," Missy said, "but we're making it and I think we've done a really good job in using the knowledge and information that we have."
The title of the new book stands for each of the couple's three children, with the ellipses "signifying a period of time in which the family had to deal with miscarriages, struggles to get pregnant, and Mia's diagnosis," according to Fox News.
"We have a strong commitment to our family, nobody's going anywhere," Missy said. "And Mia's just a wonderful human being despite having these challenges, so I'm hoping it will give people hope and encouragement that no matter what trial they're going through, if they'll take some of the aspects that I lay out in the book, and also some of the mistakes that we made that we're able to share, they can say 'OK, if they can do this, I can do this.'"
