29/08/2024
When Merrick was born, we noticed the back of his head formed a point. While we were still in the hospital following delivery, we asked the pediatricians what they thought about this point, and we were told it is normal and that it could be attributed to how the growth plates meet. Most of the time, as the head grows, the skull rounds out, but at Merrick's 4-month pediatrician appointment, our pediatrician referred us to a neurosurgeon as the point should have been gone by that time. On July 5th, Merrick underwent X-ray and CT scans and met with Vanderbilt Children's neurosurgery and plastic surgery where he was diagnosed with multiple suture craniosynostosis at 5 months old.
Craniosynostosis is the premature closure of the skull, or the sutures of the skull. In Merrick's case, he has a particularly rare type of craniosynostosis which involves the fusion of the sagittal suture and both lambdoid sutures of his skull. When seen on a CT scan, the fusion of these three sutures forms a three point star identical to the Mercedes Benz symbol, hence the name Mercedes Benz Craniosynostosis. If left untreated, craniosynostosis can cause a host of long term effects including headaches, seizures, cognitive impairment, or blindness to name a few, but Merrick will be undergoing Cranial Vault Reconstruction (CVR) surgery at Monroe Carell Jr. Children's Hospital at Vanderbilt on the morning of September 5th to address his multiple suture craniosynostosis and avoid these long term effects. CVR surgery involves the separation and resetting of the fused growth plates of the skull to allow sufficient room for the brain to grow and develop normally. This surgery will last 4 - 5 hours. Following the surgery, Merrick will stay the night in ICU and then be transferred to a normal hospital room assuming his recovery goes well. Our neurosurgeon, Dr. Bonfield, and our plastic surgeon, Dr. Golinko, will both be performing the surgery as a joint case. Our experience with Vanderbilt Children's neurosurgery and plastic surgery has been fantastic, and we are incredibly lucky to be so close to such a great facility and doctors. They have answered all of our questions and have been very informative and thorough with their diagnosis and information on the condition and surgery.
I am creating this page to bring more awareness to Mercedes Benz Craniosynostosis and to keep our family and friends updated on Merrick's journey. It has been a difficult two months waiting for this procedure to take place and learning everything we can about this diagnosis. The best thing that has helped us has been talking to other people who have experienced this same condition and hearing the details of their experience. We hate that Merrick has to experience this, especially at such a young age, but we are thankful it can be addressed. Merrick is the happiest little boy, and he is healthy as can be other than this one item. Please keep Merrick and our family in your thoughts and prayers as we go through this journey together.
