‘A huge life-saver:’ Anne Carlsen Center serves people with developmental delays, disabilities
GRAND FORKS — To say that 8-month-old Murdock Allen has had some setbacks in his short life is an understatement.
He had an imperforate anus, a congenital birth defect in which the opening to the anus is missing or blocked.
“It was a huge shock to us,” said his mother, Hannah Allen of Arvilla. She and her husband, Joseph, “had no idea” that their son had the defect before his birth.
Murdock needed immediate surgery to construct a colostomy, an opening through which stool is passed and collected in a bag attached to the abdomen.
The condition is “pretty rare,” affecting one in 5,000 newborns, Allen said. Other abnormalities sometimes accompany it, such as limb deformities and problems that affect the heart, kidney and spine.
“Thankfully, Murdock doesn’t have any of those problems,” she said. But after surgery, he developed E. coli sepsis — a type of blood poisoning — and bacterial meningitis, inflammation in the brain and spinal cord.
Dealing with a newborn with a serious birth defect “was overwhelming to us as parents,” Allen said. “We had to learn how to care for the colostomy — changing the bags and emptying them.”
Murdock also had torticollis — literally a “twisted neck” in Latin — a result of his head being turned always to the left to accommodate a right jugular intravenous line used to treat his illness in his first month of life, Allen said.
Even though she and Joseph already had a child — Daniel, then almost 2 — they felt unprepared to care for Murdock, she said. “We had no experience.”
Referred by their pediatrician to the Anne Carlsen Center in Grand Forks, the family qualified to receive early intervention services aimed at helping Murdock overcome the disadvantages that threatened his development.
“We were scared. It was like being brand-new parents again,” she said. “This child had problems we’d never dealt with before.”
She and her husband began to notice that Murdock wasn’t exhibiting normal developmental behaviors.
“He was not reacting to our facial expressions — like smiling, for example — when he should have been,” she said.
The surgeries and illnesses Murdock endured had taken a toll.
“Whenever you have surgery (in infants) it slows everything down” in their development, Allen said.
Soon after Murdock was released from the hospital, the family started receiving early intervention and respite services from the staff of the Anne Carlsen Center in Grand Forks. After an evaluation, services were also extended to Daniel.
Murdock qualified because of his birth defect and Daniel because of delayed speech development, Allen said.
Children who qualify for early intervention services automatically qualify for Medical Assistance funding, part of the federal Medicaid program, to cover the cost of services, according to Ramona Gunderson, a program director at the Anne Carlsen Center.
Eligibility is based on a comprehensive evaluation, she said.
A case manager with the North Dakota Department of Human Services oversees her family’s case, Allen said.
The financial aspect “is very important to us,” she said.
Because Allen decided to discontinue working outside the home and stay home with her boys, “we’re living off of one income,” she said. “If we had to pay out of pocket, there’s no way we could afford the services.”
Bobbi Carrlson, an occupational therapist, comes into the Allen home once a week for a couple of hours to work with the boys. Other therapists and education specialists and respite caregivers also provide services in the home.
“Murdock is not quite sitting up or rolling over yet,” Allen said. But “he has really come a long way” since personnel from the Anne Carlsen Center began working with him.
“They’re teaching him gross motor skills, like banging things together and reaching up for toys,” Allen said.
Murdock still prefers to look to his left, probably because of torticollis, and prefers to roll to his right, possibly to avoid pressure on the colostomy, Allen said. “Maybe, it hurts a little.”
Carrlson and her colleagues “work on all areas of development” with Murdock, she said. These “are often impacted when a child has gone through surgery … (or) had multiple medical issues.”
During play, mealtime or other routines, she encourages him to move in specific ways or practice skills that are a little difficult, she said.
Usually, babies are rolling over at six or seven months, Carrlson said. “So, (at eight months) he’s a little behind.”
She encourages Murdock to make movements that strengthen his back and arm muscles, she said. She calls these “pre-crawling skills.”
During “tummy time,” on the floor, she tries to teach Murdock to hold his upper body up with one hand while reaching for a toy with the other. She holds the toy at different heights to encourage him to use more muscles, she said.
“With his illness he had, we had some concern about his vision and hearing,” Carrlson said, “but he’s doing well — seeing things and responding to sounds.”
Carrlson is also helping Murdock transition from the bottle to solid foods, she said. She offers a morsel of food in her hand to entice him to reach out and take it with his fingers, to improve his motor skills and hand-eye coordination.
“We’re working on several (areas of development) at a time. They are all needed to do a task,” she said.
She collaborates with physical therapists who work with Murdock at the Altru Rehabilitation Center in Grand Forks, she said, to make sure “we’re using the same techniques.”
Murdock “has made some really nice progress,” she said.
With Daniel, Carrlson is working on fine motor skills and speech sounds, Allen said. “He’s come a long way in the few months she’s been working with him.”
A speech therapist and educator from the Anne Carlsen Center are also on Daniel’s “team,” Carrlson said. “So, we’re covering all areas of development, not just the occupational area I specialize in.”
Carrlson coordinates her goals with those of her colleagues who also provide therapeutic services in the home, “so we are all working on the same issues,” she said.
While watching Carrlson and other professionals interact with her children, Allen learns skills and techniques she and her husband use to keep them progressing.
“Bobbi is amazing,” she said. “She gives us good ideas about things we can work on.”
‘Super happy baby’
Murdock had to return to the children’s hospital in January for a second surgery, and his parents are planning for a third in April, both related to the colostomy, she said.
Despite all he has been through, he’s smiling, attentive and active.
“He’s a super happy baby. He loves his big brother,” she said. “His brother can do nothing wrong.”
Allen is grateful for respite services provided in her home, she said. “It’s a huge life-saver. It really fills that need for support.”
Respite care workers from the Anne Carlsen Center come into the home several hours each month to take care of Murdock, so the couple can focus on Daniel.
She and Joseph take their older son out for activities he really enjoys, such as bowling and visiting the library and Canad Inn’s water park, she said.
“He likes to go to Cabela’s to look at the fish.”