Emma Rose Romig is doing well at the age of 14 months, after having surgery in May to correct a skull problem that was discovered a few months after she was born.
Her mother, Rebecca Romig, shared Emma’s story to encourage new parents to look for signs of this condition.
Emma has right coronal craniosynostosis, which was diagnosed when Emma was 4 months old. The right frontal part of her skull was closed, so her brain could not grow more on the right side. It is not supposed to close until the child is 2 or 3 years old, Rebecca explained.
This meant her skull was misshapen. This skull deformity occurs once in every 2,000 births, Rebecca said.
Emma lives in Hannibal with her mother and her 7-year-old brother, Christian Hooper. Her dad, Billy Powell, lives in Monroe City, and she has a sister, Anna, 6, and brothers, Ethan, 18, Nick, 16, and Jackson, 13. They all are from Palmyra.
Rebecca works for the Hannibal Parks & Recreation Department, and said, “they have been so accommodating. I took the whole month of June off to stay home with her, and they let me off for all of her appointments. They have been very supportive and accommodating.”
Emma’s surgery was on May 28 at St. Louis Children’s Hospital. Her surgeon’s were pediatric neurosurgeon Dr. Matthew Smyth, MD and pediatric craniofacial surgeon Dr. Kamlesh Patel, MD.
“Dr. Smyth did the first half of the surgery to make sure that the dura surrounding the brain was not punctured as they removed the bones, and the Dr. Patel did the second half of the surgery to reshape the bones and put them back,” Rebecca said. “She had a CVR/FOA, which stands for cranial vault reconstruction and frontal orbital advancement.
“Because of her suture closure, her right eye orbit was slightly recessed and higher than it should have been,” Rebecca continued. “Her forehead on that side was flattening and she had no eyebrow bone. So, if she would have had a fall, that left her right eye completely unprotected.
“The right coronal suture being closed kept her brain from growing normally. Her brain could not grow forward on the right side so is grew more on the left side which resulted in a profusion on the left. This is noticeable in her pictures. They overcorrected her forehead when they did the surgery so that when her forehead pulled back as she grows it should pull into normal position.
“Her surgery was a success, and she used less blood than they thought she would use,” Rebecca said. “She recovered really quickly.
“At her last check up (in September) Dr. Patel said she was looking great! The plates and screws that they used to hold her bones together are all dissolvable. She had five plates installed to hold it all together. Her surgery was in the $100,000 range, and her insurance covered all expenses! What a blessing that was!”
Page 2 of 2 - Dr. James Thornton, Emma’s Hannibal pediatrician, noticed her condition at 4 months and said she needed to have a CT scan, Rebecca said. “I was really happy he caught it when he did and decided she needed to go down for a CT scan.
“Early detection of this condition is crucial to ensure the best treatment for the child and to prevent possible complications,” she said. “Some things we were worried about were her vision, due to her eye orbit being affected, and intercranial pressure, due to the suture being closed. It’s so important to get this diagnosed and treated right away to prevent any developmental delays or other problems.”
Emma had developmental testing done right before surgery and is at a high average in most areas, her mother explained. “She will have a CT scan done again this coming May to make sure her sutures are all open as they should be. She had a vision test again Oct. 11 to make sure there is no more pressure on her eye. If there is, she will need an eye surgery, but we are praying that she will be cleared!
“She will have yearly CT scans until she is 5 and then her treatment plan will be reviewed and adjusted. ... Right now she will meet with her cranio team in St. Louis every year. Saying that, it’s also very important to have this type of condition treated by an experienced cranio-facial team.
“I want to raise awareness for the condition,” Rebecca said. “The sooner you get diagnosed, the better the treatment options. She could have had a different surgery (if it had been diagnosed earlier). And if it had not been diagnosed until she was older, it would have had more complications.”
Rebecca discovered support groups for craniosynostosis on Facebook, reporting two that “were very helpful while going through this whole process are CCA and Cranio Care Bears. CCA is the Children’s Craniofacial Organization. They are holding their Annual Cher’s Family Retreat in June 26-29 in St. Louis this coming year. Their address is ccakid.org.
“Cranio Care Bears (craniocarebears.org) makes care packages to send to the families awaiting surgery. ... I encourage everyone to join and support CCA and Cranio Care Bears.”
For more about Emma, see her page on facebook, Baby Sister Emma at www.facebook.com/EmmaRoseRomig!