Reese Knight, Living with Cerebral Palsy & Hirschsprung’s disease
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Reese Knight and her sister, Rylee
Reese Knight’s personality and overall joy for life is contagious. “My pregnancy with Reese was unplanned, but no complications for her during the pregnancy,” said her mother, Lesley Knight. “Every scan was normal, she was always on track with no sign of anything wrong with her. She handles day to day like any normal child her age. She does not really notice she is different.”
Due to having chronic high blood pressure, Lesley was hospitalized quite a bit, but never developed preeclampsia. “They would just keep me to monitor her and my blood pressure,” Knight said. “I even got the steroid shots to help her lunch be more mature and ready if she was to come early.”
On March 28th, 2016, the doctors decided to induce Lesley at 36 weeks and 5 days into her pregnancy. Reese was born at a healthy weight at 6 pounds 6 ounces. “I was only in labor a few hours. She came out crying, but they did notice that she needed some oxygen.”
Reese was taken to the nursery floor to receive oxygen, but the doctors realized that she still wasn’t getting enough and sent her to NICU to be on the ventilator. Reese would remain in the hospital for three months, but not for being a preemie. “It took them that long to find out what was wrong with her,” said Lesley.
In the NICU, Reese was on a ventilator, but soon pulled it out after being there. The doctors then just moved her to oxygen to help with her levels. While in the NICU, another issue began to arise. When Reese would start eating, her stomach would get extended and hard. “You could literally see all the air loops in her tummy,” Lesley said. “They would put a tube in her mouth that went down to her belly to drain the contents out.”
If Reese’s stomach would get too big, she would start throwing up. “She was not passing gas or having any bowl movements.” Feeding her then draining the contents from her stomach was reoccurring for almost two months because the doctors were not sure what was wrong.
The doctors then made the choice to stop feeding her and to put her on IV fluids. They then did a biopsy of her rectum that finally gave them answers. “She has total colon Hirschsprung’s Disease,” Knight said. Hirschsprung’s disease is a birth defect in which nerves are missing from parts of the intestine.
The biggest question that Lesley had was why did it take so long to find answers. “It’s a rare disease, but the surgeon that was on duty refused to do the biopsy because Reese did have her first bowl movement when she was born,” Lesley said. “So she was determined that Reese could not have Hirschsprung’s because of this.”
Finally having answers was a sense of relief for the entire family, but things weren’t over just yet. “We literally would take ten steps forward one day and the next would be one hundred steps backwards, it was a lot,” Knight said.
At two months old, Reese went into surgery to get a ileostomy bag. An ileostomy pouching system is a prosthetic medical device that provides a means for the collection of waste from a surgically diverted biological system and the creation of a stoma. “Reese’s colon did not work at all so therefore she has to have a stoma put it.”
On June 21st, Reese was released from NICU, coming home with an ileostomy bag, feeding tube and oxygen. “The feeding tube and oxygen was taken out and off three months later.”
As a baby, taking Reese somewhere involved taking a diaper bag full of medical supplies and an oxygen tank. “It was very hard to get out much with her. I was never that mother changing baby diapers on tables in a place,” Lesley said. “I would go to my car and change her because I had to either replace her bag or dump it and I didn’t want her exposed to all those germs or people staring.”
When Reese was about two years old, a neurosurgeon at Carle informed Lesley that Reese had some spots on her brain when an MRI was done in the NICU. “They referred to them as white calcium spots, but they were never really concerned about them,” Knight said.
The doctors referred to Reese as having low muscle tone in her upper body and too much muscle tone for her lower body. “They also said she was behind in development due to being in the hospital for a long time and so sick,” Lesley said. “Never once was Cerebral Palsy mentioned.”
Cerebral palsy is a group of movement disorders that appear in early childhood. Signs and symptoms vary among people and over time, but include poor coordination, stiff muscles, weak muscles, and tremors. There may be problems with sensation, vision, hearing, and speaking.
After an appointment at Riley’s Children’s Hospital to a developmental doctor, Reese was found to have cerebral palsy. “I believe it was overlooked because her sickness was their main concern.”
Having a child with many needs, Lesley had to quit her full time job, which left the family with one income.
Lesley started taking Reese to Riley’s Children’s Hospital to get established with a surgeon and GI doctor. Reese also began physical therapy at Sarah Bush once a week. “We traveled to Carle in Urbana for speech once a week,” Knight told us.
Reese continues to get physical therapy and speech. “Reese was lucky enough to be part of early intervention and we were able to get in home services as well, that helped us so much.”
Reese has doctors in Peoria, Champaign/Urbana, Indianapolis and St. Louis. “We do travel to all these places, but thankfully it’s not as frequent as it used to be,” Lesley said. She had teeth surgery at age three to fix some of her teeth and had botox done on her legs.
In the beginning of summer, Reese will have another surgery to help her walk better. “They will go in the spinal cord and find the nerve that is pretty much telling her muscles to be too tight in her legs, then the doctor will burn the nerve so it can never work again,” Knight said.
This surgery will get rid of the spasticity in her leg muscles, letting her legs be loose. The second part of the surgery will be done three months later. The second surgery will be at a hospital in St Louis, but done by a different doctor.
“This surgery will involve stretching of the muscles in the legs since they will be loose and stretchable at this time,” Lesley said. “She will hopefully be able to walk with her foot flat and somewhat normal after she has both surgeries.”
If Reese is to have a growth spurt then a possible third leg surgery would be looked at. With the first surgery, Reese has to be in the hospital for five days and in a wheelchair for ten. The second will involve a wheelchair and possibly braces as casts as well.
Life hasn’t been easy for Reese, but she doesn’t let that slow her down. Reese does still have to drink formula due to stomach issues and it helps her get more nutrients along with the regular food she eats. “She is small for her age, but she’s not bothered by it,” Lesley said. “She loves make up, clothes, bags, shopping and money. She’s your typical five year old going on twenty one.”
Reese is able to attend kindergarten in Chrisman, but only goes until twelve thirty due to getting worn out.
“She is very independent, there are only a few things she cannot do herself. She is a very smart, beautiful little girl,” Lesley said. She can brighten up anyone’s day, she is known as the jokester in her class. She doesn’t realize she is different and I hope I can keep it like that for awhile.”
