Missing connection: Baby born with rare brain disorder

“She’s overcome so many obstacles, it just blows my mind sometimes."

By: Kay Todd .

Picture of Grace, a Sanford Health patient
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Kaela Connaughton went to her 20-week prenatal checkup filled with excitement. This was the appointment where she could find out if her third child would be a boy or a girl.

But Kaela and her husband, Kevin, didn’t want to know right away. They planned to be surprised in the presence of friends and family at a gender reveal party a few days later.

The last thing on their minds was that something could be wrong with their unborn baby.

But when the ultrasound showed an abnormality in their baby’s brain, their thoughts of celebration were dashed. The Bismarck, North Dakota, couple was referred to a fetal specialist at Sanford Health in Fargo, North Dakota.

The Connaughton’s baby, who they learned would be a girl, had a rare disorder called agenesis of the corpus callosum, better known as ACC. The area that connects her brain’s two hemispheres had failed to develop normally.

At 34 weeks, Kaela was prepared for a C-section in Fargo where pediatric neurosurgeon Tong Yang, M.D., was waiting to operate on the baby girl. The family prepared for the worst.

“It was heartbreaking just thinking about it,” Kaela said. “You just don’t ever want to have your kids go through something like that. We had to make end-of-life decisions just in case. You can never decide that.”

Their worst fears were averted when Grace Connaughton was born Oct. 10, 2016. She came into the world screaming, a huge sound of relief for her family who didn’t know if she would even survive the delivery. The next day, Dr. Yang placed a shunt to relieve the fluid on her brain.

Grace spent the next five days in the Sanford Children’s Neonatal Intensive Care Unit, receiving lifesaving oxygen and recovering from the surgery.

“That place is just awesome,” Kaela said. “You don’t have to go somewhere far away or out of state. This hospital is one of the best.”

After the family took Grace home to Bismarck, they were able to follow up without a 2 1/2 hour drive to Fargo because Dr. Yang comes to Sanford Heath in Bismarck once a month to check up on Grace and patients like her.

Kaela and her family recently celebrated Grace’s first birthday. The shunt Dr. Yang placed continues to drain fluid from her brain and into her belly. When she turns her head just right, the tube shows underneath a layer of baby fuzz.

From her first breath of air to today, Grace has beat the odds. She’s babbling away, grabbing onto furniture and walking along like any other baby her age.

“She’s overcome so many obstacles, it just blows my mind sometimes,” Kaela said. “The brain is incredible. If you are missing something, everything else compensates for it.”

Kaela hopes Grace continues to grow and develop just like any other child. She knows if she ever has a problem, Dr. Yang is just a phone call away.

“The support is just phenomenal,” Kaela said. “I would go back to Sanford in a heartbeat.”