By Jessica Pounds
Danita and Clint Tutt of Cleburne have prayed every day for the past 13 years.
When their son, Colby Tutt, was born he weighed a delicate 1 pound, 3 ounces, and measured 9 inches long.
“He came when I was 27 weeks along,” Danita Tutt said. “I had antiphospholipid syndrome which means my body rejects pregnancies and I have to take heparin shots twice a day to keep blood clots from forming on the placenta.”
Danita Tutt said she wasn’t aware at the time she was pregnant that she had the condition.
“Four days after he was born they had noticed he had a grade four [intraventricular] hemorrhage on his brain,” she said. “They told us they would do what they could to get the bleed stopped, but it would be touch and go because he was too small to operate on his brain.”
According to the U.S. National Library of Medicine, an intraventricular hemorrhage of the newborn is bleeding into the fluid-filled areas inside the brain. Blood clots can also form and block the flow of cerebrospinal fluid.
“The blood in the brain stopped, but it caused brain damage,” Danita Tutt said. “He had about 50 blood infections back to back, he had renal failure five times and he wasn’t putting any weight on.”
Colby spent six months in the Neonatal Intensive Care Unit before he was allowed to go home, and even then he was sent with a respirator and a heart monitor.
“You talk about an emotional roller coaster,” Danita Tutt said. “It seemed like we would move forward one step and have to take two steps back.”
Since their son was so fragile, Danita and Clint Tutt put signs on their front door politely asking if visitors had a cold to please stay away.
“We weren’t trying to be mean, but doctors told us if he got sick outside of the NICU he was going to have to come back and wasn’t going to go home,” Danita Tutt said. “It made a lot of people mad, but for a whole year the only time I took him out was for a doctor’s appointment. Even when I got to the appointment they would sign us in and take us around back so we wouldn’t be around anyone — he just had no immune system.”
Christie Morgan of Saginaw has been friends with Danita Tutt for 25 years and has been by her side through her family’s journey.
“Danita is the strongest person I’ve ever known,” she said. “She is just always at the hospital and she will listen to what the doctors have to say, but if she didn’t agree she would see another doctor to get more answers. She just never settles for what they have to say.”
When Colby was a toddler, Danita and Clint Tutt had another son named Colton.
“He was born with primary ciliary dyskinesia,” Danita Tutt said. “So far we have been fortunate with IV meds, but he has about 15 surgeries and is part of an undiagnosed research program in Houston.”
PCD is a disorder of the structure and function of cilia — tiny, microscopic moving structures that line the airways, ears, sinuses and some other structures.
The sweeping, wave-like motion of cilia is important for keeping these areas clean and free from infection. Without properly functioning cilia, people with PCD are unable to protect their respiratory system. Frequent infections of the lungs, ears, throat and sinuses are common and can lead to serious and permanent damage.
“Whenever we try to find doctors for him it’s hard because doctors here only know so much about this disease,” Danita Tutt said. “There is just not enough awareness about it.”
Although he needs extensive therapy, the Tutt’s have been able to manage Colton’s disease which helps give them time to tend to Colby’s more urgent needs.
Because of the brain hemorrhage at birth, Colby — who is now 13 — has 34 separate medical conditions, a list that includes a blood infection, heart condition, kidney disease, short-term memory loss, high functioning autism and brittle bone disease.
Colby was previously on growth hormone shots because he bones had stopped growing.
“Doctors said if he didn’t start growing his organs would outgrow his body and he would not live,” Danita Tutt said. “He is now in a wheelchair most of the time because he recently passed out from low pressure and severe dehydration.”
Several of Colby’s conditions have caused damage to his entire gastrointestinal tract.
“He has a colon three times the size of an adult’s colon and he has to do stomach flushes every night,” Danita Tutt said. “He cannot absorb any nutrients on his own so his diet consists of total parenteral nutrition supplements and his weight is down to 56 pounds.”
Through his sons, Clint Tutt said he has learned to never give up.
“I have learned that everything they go through makes us and them stronger no matter the difficult trials they face,” he said. “They are still little boys who just want to be regular kids who laugh, run and play, and sometimes they know that can’t always do that. Makes you appreciate the small things and cherish every moment you have with them.”
Earlier this month, Colby got the surprise of his life as World Wrestling Entertainment wrestler Erick Rowan paid a surprise visit to his home. WrestleMania also arranged for a limo to pick him and his family up to take them to the event at AT&T Stadium.
“WWE has been his last wish,” Danita Tutt said. “I noticed he wasn’t feeling good at that time and he didn’t want to go back to the hospital. We went to the emergency room anyway and they told us he was septic and may not even make it through the night.
“We told the doctor come Sunday, we are taking him to see WWE because that is all he has talked about and what he has waited for for so long. Last year he missed it because he was in the hospital and we told him, sick or not, he wouldn’t miss it again.”
Colby stuck it out, Danita Tutt said, and had the best time.
“The smiles we got to see are just priceless,” she said.
Clint Tutt said the most memorable time he has had with both children is a trip they took to Walt Disney World.
“It was the best time ever with the boys,” he said. “They stayed healthy that whole week and we made lots of special memories together.”
Last week, friends put together a benefit to raise money for the family. The event included entertainment by Sonny Burgess, the Josh Weathers Band and more.
Danita Tutt said the turnout for the benefit was humbling.
“We were just at a loss for words,” she said. “I didn’t realize how many people love us and the love they have for our boys is just amazing. To see how everyone came together for us is just awesome.”
Danita Tutt said Colby has found peace for whatever comes next.
“Last week he was telling us about going to see God and that he has been seeing a light for awhile,” she said. “He keeps telling us that he is ready to go to Heaven so he won’t be sick anymore. It just gives us peace knowing he is going to be with our savior.”
Colby, Danita Tutt said, has earned his warrior status.
“Between all of his disabilities I don’t think any other kid, or any other adult, could go through what he has and still be so loving and kind and tenderhearted,” she said. “I believe Colby has served his purpose that God put him here for.”
To follow the Tutt’s journey, visit www.gofundme.com/tuttboys.