When the stars of A&E’s “Duck Dynasty” discovered at 31 weeks gestation that their youngest daughter would be born with a cleft lip and a possible cleft palate, they hardly knew where to turn.
Missy Robertson, whose husband Jase stars in the hit show alongside his brothers, father and uncle, was undergoing a 4-D ultrasound to see the features of her unborn daughter in summer 2003, when she noticed something was amiss.
“I noticed it, and when I asked the technician, I looked at her and realized she had already seen it and she said ‘I need to get the doctor,’” Missy told FoxNews.com. The doctor then confirmed that Missy’s baby had a cleft lip, and possibly a cleft palate.
“I had heard of it, but I knew nothing of the condition at all,” Missy, who lives in Louisiana, said.
According to the Centers for Disease Control and Prevention (CDC), 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. A cleft palate occurs when the tissue that makes up the roof of the mouth does not join together completely during pregnancy, while a cleft lip occurs when the tissue that makes up the lip does not join completely before birth.
“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 told FoxNews.com. “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.”
In September 2003, a few weeks after the ultrasound appointment, Mia Robertson was born with both a cleft lip and palate, and introduced to her older brothers Reed, now 20, and Cole, now 17, who had been shown pictures of what their sister might look like. Just 17 days later, she arrived at the International Craniofacial Institute in Dallas, Texas, to be fitted with her first palatal appliance.
“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, adding that Mia’s been receiving care there for all of her 12 years.
“We wanted the best possible care we could find for her and this condition,” Missy said. “There’s 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.”
Missy has written a new book titled “Blessed, Blessed … Blessed,” that chronicles some of the challenges the family has faced and been tested with, especially in finding the right treatment and care for Mia. The title 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.
“We overcame it but you know, we’re all still on the journey,” Missy said, adding, “but we’re making it and I think we’ve done a really good job in using the knowledge and information that we have.”
One of the challenges that the family faces, Jase said, is that every time Mia goes in for a surgery, her appearance changes, which can be both difficult and frustrating for a parent 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.”
Most recently Mia underwent a 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 so that the bottom jaw does not outpace growth of the top. Without the surgery, Mia would have trouble with speech, and could easily choke on her food.
“It was definitely the hardest one in my opinion,” Missy said of the surgery. “It was very difficult because there is a lot of blood involved when you cut through bone.” 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.
“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,” Missy said.
When all was said and done, the surgery and tool had moved Mia’s top jaw an inch forward, which doctors hope will be enough for now as she’s currently in a growth spurt. Missy said there are no surgeries planned for her in the imminent future, and Mia continues to wear headgear at night to help keep up with what the surgeons have done. She also 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, for other parents to go to as a resource, something that they was not available to them 12 years ago.
“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.”
Missy said the Robertsons rely on both their faith and their strong commitment to each other to face whatever challenges may lie ahead. She hopes that through the website and book, other families will learn from their experiences and be encouraged.
“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.’”