At 11 months old, Georgia has already shown incredible resilience and strength throughout her life. Diagnosed with isolated nonsyndromic unilateral craniosynostosis at 8 weeks of age, Georgia’s journey has been a whirlwind of medical appointments, treatments, and hopeful recovery.
Karin and Edwin knew early on that something was different about their daughter, Georgia’s, head shape. They voiced their concerns during her 1-month and 2-month check-ups. At her 2-month appointment, the nurse practitioner conducted a thorough examination. It was then that they noticed an absence of the soft spot on the top of Georgia’s head. This was a critical moment for her family.
Craniosynostosis is a condition where one or more seams between the bones in a child’s skull close too soon. This premature closure prevents the skull from growing properly and results in an abnormal head shape. If left untreated, craniosynostosis can increase intracranial pressure, leading to developmental problems, headaches, brain damage, or even blindness.
Learning that their daughter had craniosynostosis was overwhelming for Karin and Edwin. “We both felt like our world was turned upside down,” shares Karin. “Between the initial diagnosis appointment and Georgia’s endoscopic craniectomy surgery date, it was only a 1.5 week span, but it felt like forever. We had a lot of appointments and spent a lot of time doing research, trying to educate ourselves and find support groups. I am an RN and had never heard of craniosynostosis until her diagnosis. Our anxiety was at an all-time high.”
Having lived in New Jersey for most of their lives, Karin and Edwin were familiar with Nemours Children’s Health. Their two older children had received care there previously, so it was a natural choice for Georgia’s treatment.
From the moment they met Dr. Aycart and Dr. Piatt, Karin and Edwin felt reassured. “We have had such a great experience with our doctors and their medical staff! From the very first day, they have made us feel at ease during a time with so much uncertainty,” they say. “We especially appreciate Dr. Aycart’s compassion and care for our daughter. He continually keeps in contact with us, and we are grateful for his transparency and open communication,” she adds.
Since Georgia’s endoscopic craniectomy, her recovery has been encouraging. She is hitting all her milestones early or right on time, a testament to the excellent care she’s receiving. “We still have a long road ahead of us, but we know that Georgia has a phenomenal team on her side,” share her parents. “Dr. Aycart communicates with our orthotist and helps navigate Georgia’s recovery plan based off her growth and developmental progress. We definitely have a positive outlook moving forward and just want her to remain healthy and strong.”
The future looks bright for Georgia. Her parents remain optimistic and focused on her health and strength. They advise other parents facing similar challenges to, “Find a support group and a medical team that you feel comfortable and confident with. It is so important. We did a bit of research in the short amount of time we had, and we did not pick Dr. Piatt and Dr. Aycart on a whim. We knew their medical background, credentials, and qualifications. No one expects to give birth to a child with craniosynostosis and it is a scary time for a parent to navigate. Lean on your friends and family, seek mental health support if needed, and try to stay strong for your little one.”
