When our son Tommy was born in 2015, he had an abnormally shaped head from his position in the womb. He was frank breeched with his feet in his face like a “V”. At 4 months old he had a CT scan but the results came back normal. All of his sutures were overlapping but they were open. We saw two specialists at two different hospitals and they all said the same thing, as his brain grows, the plates will expand and fall into place. As long as he meets his milestones he will be okay. And he did. He hit them all on time and sometimes even early.
When Tommy was 18 months old he knew about 20 words and two word combos. Fast forward to January of 2017 (~20months old). Tommy started to lose his speech. Speech regressions happen to many children so his doctors didn’t seem alarmed. But Tommy’s regression continued, his words weren’t coming back and he wasn’t learning new words. Eventually Tommy’s speech became so limited he was down down to only two words, no and hi. He also had some mild physical problems, didn’t have much core strength and he had arm weakness. He couldn’t swing both arms when walking or running. I took it upon myself to make all the necessary calls including, early intervention, his pediatrician, and his craniofacial doctor. The advice was always the same, see a neurologist.
We saw the Neurologist, Dr. Chadehumbe in May 2017. She ordered an MRI to see if there was something in his brain causing the speech regression and muscle weakness. On June 2, we found out that he has several problems with his brain. His diagnosis was chiari malformation, flattening of optic nerves, partially empty sella and mild intracranial pressure. We were shocked and speechless, we had never heard of these things before. The next step was to see a neurosurgeon to investigate if he needed brain surgery.
A barrage of tests and therapies followed. Tommy was approved for, and began, speech and physical therapy. He had several other radiology tests to see how the chiari malformation was affecting him. A full spine MRI came back normal, a swallow study showed a swallow delay, and a sleep study showed mild central sleep apnea.
We finally saw two Neurosurgeons in July 2017. Due to his symptoms and radiology test results, they did not feel like decompression surgery was necessary at this point. The suggested we just monitor his symptoms and follow with additional radiology tests. This didn’t sit well with me because I had always been concerned about his head shape since the day he was born, his head was always long front to back. My mother’s intuition was screaming at me to keep searching for answers. I asked all of these specialists about his head shape and all FIVE doctors reassured me that no, his head shape was not a factor and he would just have an odd shaped. His sutures were open. Well, I didn’t believe them.
So we went back to the craniofacial surgeon that we saw when Tommy was an infant, Dr. Jesse Taylor at Children’s Hospital of Philadelphia. I finally felt like someone was listening to me. He said I could be onto something and I had a reason to be concerned. He ordered a CT scan and in October, after the scan, we met with him and we found out that Tommy has Posterior Sagittal Craniosynostosis (his sagittal suture closed too early and wasn’t allowing his head to grow properly and this was putting pressure on his brain) and he needed surgery. We also saw Dr. Jay Storm and he said surgery was a must. Once again we were shocked and stunned that this was happening to our little boy. The doctors could not guarantee that this would solve Tommy’s speech regression or muscle weakness but we hoped and prayed that the surgery would help. We did a ton of research and learned all about his diagnosis.
January 5, 2018 was the big day. The surgical team made an incision across his head from ear to ear in a zig zag pattern. They removed his skull, reshaped it and replaced the skull with plates and screws. He needed more space inside of his head for his brain. We found out after surgery that his ICP (intracranial pressure) was elevated. At that moment we knew, as parents, thatwe had made the right decision for our son. We cried many tears of relief. If we had waited the damage caused by the ICP would have increased exponentially.
Now, he is doing amazing. Tommy is incredibly smart. He has been a rockstar through all of this and he is truly our hero. His head is now perfectly shaped and his incision healed nicely. The night of his surgery he said “I want mama”. Three weeks post op, he was up to 100 words. By two months post op, all of his physical problems were gone. He could sit up while going down a slide, he was able to walk up stairs with more ease and he could swing both arms equally. By four months post op, he was up to 250 words and was using two word combos. Now, he can speak in full sentences.
As we move forward we are now hoping and praying that the damage the pressure of the sutures caused will be reversed. Our tears of fear are now tears of joy! Tommy will be monitored for years to come but we have lots of faith in a positive outcome. We are very thankful, and grateful for our son’s incredible surgeons. We will forever be grateful for them, fixing our son and saving him from becoming worse. Without their help and intervention our son could have become much worse. They will always hold a special place in our hearts.