Lily was born with a ridge down the center of her forehead. It wasn't a huge issue- people really didn't notice and we didn't care because she was still the most beautiful little girl our eyes had known. As she aged her head circumference was a bit small and given the family history of craniosynostosis (big bro Teddy had this with surgery to correct it) and the bump we were referred to a neurosurgeon. They too were concerned and at 3 months it revealed that the suture was not fused and no follow up was needed. So we didn't.
When Lily was 24 months we changed pediatricians and I took Lily in for a checkup due to concerns regarding her having difficulty with following directions - also known as auditory comprehension. They noted the ridge down her forehead and referred us for another CT scan which showed that the suture was indeed fused. At first we were upset until we (and they) realized at this age it should be fused. We were still referred to Riley to check it out. In the mean time Lily began first steps with Occupational therapy, speech therapy and a psychologist to help her with auditory processing and the issues involved with that. She remains a interesting case as she has very well developed expressive language and good reasoning and problem solving despite having a fairly severe difficulty understanding spoken language.
Leah was becoming a concern as she too had developed a ridge; this time at the age of 6 months. Unlike the other two Leah appeared to have a normal skull in all regards at birth and in the early months. She was scanned the week following Lily and was also found to be fused. This was a bit more unusual at her age.
So we waited the agonizing nearly 6 weeks wait to get into a neurosurgeon at Riley to find out if both of our beautiful girls would need a fairly nasty surgery.
We did sneak in a first opinion from the neurosurgeon that initially had seen Lily at 3 months. He stated that both girls despite the ridge were completely normal and no surgery was needed in either case. We were completely okay with that despite the unusual appearance of their foreheads- no surgery sounded good.
We did get worked in a bit early at Riley and met regarding Leah first. The decided to wait and see how she grew into her bones a bit. It made good sense to me.
When Lily went in for her evaluation we were fully expecting them to tell us to grow bangs and forget about it. That was not the case. Although her brain appears normal there are some neurologic concerns. As she grows she may have headaches from the unusual cavity for the brain as it grows. Although unlikely, she may develop intercranial pressure which can be very serious. Or she may just be a cutie pie with a bump on her forehead. They classified her as moderate and recommended surgery. The surgery is called a reconstructive craniectomy. She is currently scheduled to have that done November 26th which is the day before Thanksgiving. Leah has a follow up appointment in February and they are expecting to again recommend surgery.
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