Birth to Three: The First Three Years Build a Lifetime (SD UCEDD/LEND)

August 5, 2013

Christmas day 2011 was supposed to bring Abby and Donny Kuper the greatest gift a family could wish for - a new baby.  But Christmas came surprisingly early for the Kupers; on Nov. 21, Gracie Kuper was born five weeks premature.

Labor was long and difficult, and during labor the child began to show signs of distress. Instead of an emergency Caesarean section, the doctor used forceps, which created a hematoma on the right side of her head.

"During her first night she started displaying subtle signs of seizure activity," explained Abby Kuper. "This included flexing her wrists toward her body and lip smacking. Her doctor thought this was a complication from the hematoma which could be pushing against her brain, so a CT scan was ordered and thankfully ruled out any abnormalities."

The Kupers were informed that Gracie would need to go straight to the neonatal intensive care unit (NICU) immediately after birth. "During her stay at the NICU, Gracie was seen by many different specialties to rule out any developmental delays. An occupational therapist (OT), physical therapist (PT), and audiologist all did an initial assessment and we were told Gracie was on the right track physically and developmentally."

With the initial fears behind them, the family brought Gracie home and at first, she flourished. But Abby started noticing that Gracie had a preference of looking right, and the back of her head started to flatten.  Gracie went to the doctor and the diagnosis was Torticollis.

"Torticollis is caused by shortening or tightening of the neck muscles resulting in decreased rotation and bending to the side opposite the affected muscle," said Kuper. "They determined the cause could have been from the trauma surrounding her birth."

Gracie's physician, Dr. Scott McKercher , informed the Kupers about a South Dakota program called Birth to Three at the Center for Disabilities. He gave the family a Birth to Three pamphlet and explained the program in detail.

"Dr. McKercher stressed the Birth to Three program is a resource that is free to any child who's medical history falls with certain guidelines and thought it would be a perfect fit for Gracie," Kuper said.

Birth to Three is a program of the South Dakota Department of Education, Office of Educational Services and Supports. Birth to Three works with other agencies to support families with children birth to three years of age with identifying needs and accessing community services.

Birth to Three services are available to any family with a child birth to three years of age who has difficulty learning, growing or behaving like other children in their age group or has a medical condition which doctors feel may need special attention. 

The Kupers contacted the Birth to Three office at the Center for Disabilities with the doctor's referral and diagnosis of Torticollis. One of the Birth to Three coordinators set up a time for an OT, PT and developmental expert for formal evaluations.

"They worked with my schedule; the developmental screening was conducted at our home and the PT/OT evaluated Gracie at her daycare," said Kuper.

Once the screenings were complete, Birth to Three contacted the Kupers to go over the results. A Birth to Three coordinator, a representative from the school district and a physical therapist went to the Kuper's home to explain the results and the path forward.

"They all gave great input into Gracie's developmental map. The two areas she lacked in were gross motor and communication," noted Kuper. The PT started working with Gracie after the evaluations.

The flexibility of the Birth to Three program was one highlight for the Kupers.

"The PT would do some sessions at daycare and at our home. It was so special because we could be present and watch the growth take place," said Kuper.

As part of the Birth to Three program, there is a six-month and annual review.

"At Gracie's six-month review we had the Birth to Three coordinator and PT over at our home to discuss the progress," Kuper explained. "There were some developmental milestones in relation to communication and fine motor skills that Laurie was not seeing that just didn't sit right with her."

The PT noticed when she conducted sessions at Gracie's daycare she lacked any personal connection, no eye contact, no repetitive speech/sounds. The PT also noticed that Gracie lacked the desire to either feed herself or crawl. Gracie received a referral to both a speech therapist and an OT.

"The communication piece of her assessment came as a surprise to her dad and I," said Kuper. "Gracie was always attentive when talking to her, and she repeated sounds and words as best she could. I asked the PT do to a session at home to see if there was a difference; sure enough, there was! Gracie passed the milestones with flying colors."

The Kupers pulled Gracie out of that daycare, and three days into her new daycare, Gracie would feed herself and showed an interest in crawling again.

"I really feel that without Birth to Three, Gracie would still be trying to catch up developmentally to kids her age. Now, she surpasses them!" Kuper said. "Gracie graduated and met her goals early. After roughly nine months of therapy, the PT and Birth to Three coordinator signed off and decided it was time for our little peanut to fly on her own. And believe me, her dad and I can barely keep up."

The Birth to Three motto is "The first three years build a lifetime." For the Kupers, their early Christmas gift of Gracie is ensured a lifetime of limitless possibilities, thanks in part to the Birth to Three program.

The Summer 2013 edition of The Outreach - the Center for Disabilities' newsletter - is now available online. Visit The Outreach page on the Center for Disabilities website to download the Summer 2013 edition.