Meet Ramey
Ramey’s Battle: a harrowing story of one resilient baby and a community of OU caregivers who fought to give her a future
OU Health Surgical Nurse and Chickasha football coach share her heroic story of hope
Meet Ramey
It was a normal pregnancy. It was a normal birth. But the first four months of Ramey Rodgers’ life were anything but normal.
When first-time mom Taylor Rodgers was induced to give birth early, she remained calm and tapped into the calmness she tries to bring to her patients as a surgical nurse at OU Health University of Oklahoma Medical Center.
“When we were pregnant, everything looked fine,” said Rodgers. “On her anatomy scan, they saw a shortened nasal bone, but nothing to be hugely concerned about.”
Little Ramey Rodgers was born on Oct. 18, 2019, and at the onset, she looked to be perfectly healthy. Doctors determined she had no major issues, and she passed her cardiac screening with flying colors.
Something’s Wrong
The family’s first scare came when Ramey underwent a 12-hour screen and her pediatrician raised concern about possible craniosynostosis - a birth defect in the joints found between the bones of a baby's skull. After undergoing a series of ultrasounds and X Rays to ensure there was no swelling, Taylor and husband, Chase, met with neurosurgeon, Joanna Gernsback, M.D. who would eventually complete Ramey’s craniectomy.
Taylor remembers, “It was just such a blessing that [Gernsback] came to Oklahoma Children’s a year before Ramey was born because she’s the only one that could do the kind of surgery that Ramey needed. We just felt so lucky to be in the right place at the right time.”
On December 11th, Ramey underwent brain surgery to correct the defect, and afterward, donned a helmet to help with the shaping of her head.
“She’s our first baby; we’re in our 20s, so even though I’m a nurse, it’s overwhelming when it’s your baby. And the thing I loved about [Children’s] was that they were there for us. Even though I work in a different part of OU Health, I’m just so thankful for Children’s Hospital and that they were there for our girl. I know I’m a nurse, but I still wanted them to break everything down for me and treat me like I’m just mom. They did that for me, which was helpful because our journey was about to get complicated.”
Little Ramey had endured a serious operation, but her warrior mode was just beginning. Her heart was in trouble.
“She passed her cardiac screening right after birth and there was no mention of a murmur or heart issues. However, at her two-week appointment, her oxygen wasn’t where it needed to be. So the pediatrician sent us back to Oklahoma Children's for full workup,” Taylor said.
Upon having an echocardiogram done of little Ramey’s heart, doctors discovered she had not one, but two heart defects: Atrial Septal Defect (ASD) and Patent Ductus Arteriosus (PDA).
“They told us that if your baby is going to have heart defects, these are the ones to have. They said she could keep eating and growing while we monitor the condition until she’s five years old. But Miss Ramey had other plans.”
Harold Burkhart, M.D. was Ramey’s pediatric cardiothoracic surgeon and is also the co-director of the Children's Heart Center at Oklahoma Children's. He was concerned. “Ramey’s heart was working about three times as hard as a normal heart, and, due to its severe enlargement, was causing breathing difficulties. The operation we did closed the defects in Ramey’s heart and gave her a little more room in her chest for easier breathing,” said Burkhart.
Ramey struggled with low oxygen, not gaining weight, having very little appetite as weeks progressed. She was struggling with some compression on her breathing tube in addition to the two holes in her heart. Finally, in February, Ramey had been through a steady stream of medical experts working to eradicate these issues: a cardiology team, dietician and nutritionists. Once the team realized the depth of her feeding intolerance, they made a recommendation to move forward with open-heart surgery.
In the final weeks, before COVID-19 would take over U.S. hospitals, the Rodgers’ found themselves in the Children’s emergency room on Feb 21 with Ramey projectile vomiting and struggling with dehydration. After multiple tests, Ramey had to be placed on high-flow oxygen and transferred to the Pediatric Intensive Care Unit (PICU) where she was diagnosed with pneumonia. The family and the team knew it was time to move forward with surgery.
Six days later, Dr. Burkhart and his team conducted Ramey’s open-heart surgery. She was four months old. Thanks to the Oklahoma Children’s pediatric cardiology team, Ramey had two holes closed and an aortopexy to relieve the pressure on her breathing tube during the three-hour surgery. She was able to go home just four days later.
Hope Restored
“Life is so different,” smiles Taylor. “She has been the best baby. While we still have appointments, she’s doing great, gaining weight and meeting her milestones. She’s jumped from the 3rd percentile to the 50th percentile,” shares the proud mom.
Ramey’s favorite summer pastimes are swimming in her inflatable pool and cheering on coach dad’s Chickasha football players.
“She’s loving life,” Taylor celebrates. “Prior to heart surgery, it felt like there was this black cloud that seemed to be following us. And now, it’s so vibrant. Everyone’s always amazed at how well she’s done. We’re so grateful to Dr. Burkhart, Dr. Makil, Dr. Sperrazza, Juanita, Melissa, and our entire team. Dr. Makil told us to just love her like we would if there were no medical issues. So that’s what we did. They kept such a good eye on her and gave us so much comfort.”
Dr. Burkhart fondly recalls Ramey’s progress to date, “Ramey’s experience is a wonderful example of the benefits of having a comprehensive children’s hospital able to take care of all the children of Oklahoma, no matter how complex their medical issues may be. Each child gets the benefit of the expertise of the entire team from the moment of diagnosis through discharge and beyond.”
So what does Taylor picture when she considers Ramey’s future now?
“We’re excited for her to live a normal life. We know she’s going to exceed all our expectations. Her scars across her chest make an exclamation point, and I tell her ‘make your life an exclamation point!’ She’s entirely that - happy, joyful. We’re just looking forward to doing normal things and seeing what she’ll accomplish. Who knows, maybe she’ll be a nurse in Cardiology! We want her to be proud of her scars. Because at the end of the day, we’re just really excited and thankful,” says Taylor.
"She’s our first baby; we’re in our 20s, so even though I’m a nurse, it’s overwhelming when it’s your baby. And the thing I loved about [Children’s] was that they were there for us. Even though I work in a different part of OU Health, I’m just so thankful for Oklahoma Children’s Hospital and that they were there for our girl."
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