ANA'S STORY

NC Children's is for kids like Ana, in all 100 counties.

A polaroid photo of Waxhaw, NC patient, Ana Palmer, with 'Meet Ana' written on the frame. A map overlays the photo in the top left, illustrating Ana's medical journey from Waxhaw, NC to Philadelphia, PA.

When Ana Palmer’s mom Kirsti and her husband Brian, of Waxhaw, NC, went for an anatomical ultrasound at 18 weeks, the sonographer could not visualize all of the anatomy, so they sent Kirsti home with unremarkable findings.  

The next ultrasound at 23 weeks was anything but unremarkable: the maternal fetal medicine specialist discovered a large Congenital Pulmonary Airway Malformation (CPAM). Kirsti’s doctor started her on steroids to shrink the cyst and referred her to Johns Hopkins for further testing. Kirsti and Brian left for Baltimore the next day.  

At Johns Hopkins, they repeated the scans, performed a fetal echo, and gave the malformation a CPAM volume ratio (CVR) score, which predicts whether the baby will develop hydrops. The baby’s score indicated a pretty grim prognosis. Fluid was already leaking into the baby’s abdomen. 

At Johns Hopkins, the team wanted to perform a full fetal surgery and place a shunt in the baby. While they wanted to give their baby girl the best chance to survive, Kirsti and Brian hoped to avoid fetal surgery if possible.  

Kirsti and Brian researched other organizations who treated a high volume of CPAMs successfully without fetal surgery and discovered Children’s Hospital of Philadelphia (CHOP), a little more than an hour away. They headed north. 

After repeating all of the previous tests, Kirsti and Brian met with a multidisciplinary team that consisted of more than 11 specialists, all focused on saving a 24-week fetus. Together, they made a plan that included: 

  • Intensive ultrasound monitoring
  • Weekly draining of the lesion
  • Kirsti would relocate to Philadelphia and deliver the baby in the special delivery unit for moms who are carrying babies with congenital disorders.
  • The baby would have surgery minutes after delivery.  

At 28 weeks gestation, Kirsti and Ana’s team decided to place a shunt in an effort to avoid weekly needle draining. While the procedure was successful, within five days Ana had pulled her shunt out, so the team continued the weekly drainage. Kirsti and Brian continued to telecommute from Philadelphia, moving to different housing three times.

At 36 weeks, five days, little Ana was delivered via Cesarean and taken to the operating room, where surgeons performed a lung resection and removed the lesion. 

Ana was in a critical condition following the surgery. Kirsti and Brian were given the option of comfort care for her, a path that would have meant letting go. But they refused to give up on their daughter, and Ana’s care team placed her on Extra Corporeal Membrane Oxygenation (ECMO), a life-saving measure that offered a glimmer of hope. 

During her time on ECMO and more than three months in the NICU, Ana had a number of complications and setbacks, including some that left her team concerned she would not survive. But little Ana was a fighter, and she continued to improve until finally, Kirsti and Brian could take her home to Waxhaw, where they had not even had a chance to set up a nursery.  

Ana, is now almost three years old. She and her family are expecting a baby brother in June. And yes, they went back to CHOP for testing just to make sure everything is OK with their little guy. 

“We’ve decided to drive 10 hours away from home for an anatomy scan,” says Kirsti. “Hopefully, in the near future other families will have access to the best technology and specialists in North Carolina.

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