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All for Sophie

Scared. Excited. Nervous. Laura and Alex Scott of West Fargo felt all of them when they learned they were pregnant.

And months later when the 20-week ultrasound showed a daughter? Elated! They’d already chosen a name: Sophie.

But that same day in February they received a call that turned their world upside down. An unexpected finding on the ultrasound would require more tests.

“I was completely terrified,” says Laura. “Everything had been going so well.”

Adds Alex: “Your mind goes wild. Of course I worried about Sophie, but Laura, too.”

Rare condition, expert help

The following Monday the Scotts met Dr. Michael McNamara, specialist from Sanford Maternal Fetal Medicine. He and his colleagues regularly travel from Sioux Falls to Fargo to provide expert care to women with high-risk pregnancies.

Alex recalls the moment their minds stopped racing: “Dr. McNamara looked right at Laura and said, ‘This is a CCAM --it’s the largest we’ve seen, but it’s going to be okay.’”

They quickly learned that CCAM stands for congenital cystic adenomatoid malformation -- a lung abnormality that for unknown reasons occurs once in every 5,000 babies. In extremely rare instances, the abnormal growth is cancerous. Later tests confirmed Sophie’s was not.

The best possible outcome would require well-coordinated care and several key steps:

  • Close monitoring to ensure the CCAM does not grow dangerously large, threatening the baby’s heart and life.
  • Frequent check-ups with an OB/GYN doctor and maternal fetal medicine specialist to oversee the health of mom and baby.
  • Delivery at a hospital with a Neonatal Intensive Care Unit (NICU), pediatric surgery and pediatric cardiology.
  • Delicate, rare surgery to remove the CCAM after the baby is born.

Close care

That same week the Scotts traveled to Sioux Falls to undergo more extensive imaging tests at Sanford’s Fetal Care Center. They also toured Sanford's Birth Place and NICU. They met with specialists including pediatric surgeon Dr. Jon Ryckman. His clear explanations, confidence and empathy impressed them.

“We went home with a complete plan,” says Alex. “We were still scared, but we were impressed with Sanford’s capabilities -- the facilities, the specialists, everything. We worked on staying positive and had every reason to believe things would turn out well. We also had great support from family, friends, even people far away who put us on their prayer chains.”

Laura felt empowered by her weekly ultrasounds in Fargo. She knew Sophie was okay and everything was on track. She also received a level of support she didn’t expect.

“The ultrasound techs and nurses were unbelievable,” says Laura. “So nice, very caring and they never treated us like something was wrong with our baby. They knew our connection to Sophie was important and they encouraged it.”

Alex accompanied Laura because he, too, enjoyed seeing Sophie. “The high-resolution 3-D technology even showed close-ups of her face. It was pretty amazing,” he says.

Safe delivery in Sioux Falls

Ongoing checkups in Fargo set the stage for the best possible delivery. It was planned for June 10 at Sanford in Sioux Falls, where the complete team for every possible scenario was readily available. Respiratory distress was anticipated.

“The care coordination between Fargo and Sioux Falls was absolutely seamless,” says Laura. “The doctors kept each other informed, they were well-prepared and they really worked as a team.”

All made a difference! Sophie safely entered the world weighing 7 pounds, 6 ounces. She immediately demonstrated lungs that worked.

“Hearing that first cry was the best,” says Laura. “That’s when we really knew everything would be okay.”

Successful surgery three months later

Sophie spent her first days in the NICU for observation. Tests showed the cyst took up the entire lower lobe of her right lung. Dr. Ryckman explained the pros and cons of immediate surgery or waiting until Sophie was 3 months old.

“He felt the optimal size was between 11 and 14 pounds, so we decided to wait,” says Laura. “We took her home, but had to be diligent in protecting her from germs. With her lung condition, even a cold could’ve been deadly.”

In September the Scotts returned to Sanford in Sioux Falls where Sophie underwent successful surgery to remove the cyst. Dr. Ryckman was able to use a thorascopic (minimally invasive) approach rather than an open procedure.

“The thorascopic technique is relatively new throughout pediatric surgery,” says Dr. Ryckman. “It takes a little longer but ultimately the babies do so much better, both short-term and long-term.”

Happy and healthy

Today, Sophie is the picture of health: a growing, happy baby with a strong future. And lung issues? None. She can be a singer, an athlete, anything she’d like.

“Sophie has great parents,” says Dr. Ryckman. “I think she’ll be an amazing kid.”

For now she’s one beautiful, smiling, cherished baby.

Posted Date: November 2011