Charlie' s Cranio
Donation protected
My name is Amanda Dieno and I am raising money to help support a very special family, who is going through some difficult times. Baby Charlie was born on December 6th, 2014 to Kelsey and Jeff Krieger. Charlie was born with his metopic suture fused and diagnosed with Metopic Synostosis and trigonocephaly. This means he will require surgery at the children's hospital in Edmonton. Charlie's surgery is scheduled for April 21st. I am hoping this page can give the family some support during this difficult time. Thank you to everyone for your support!
The following information was written by Kelsey about Charlie's journey:
Hello everyone. I will start by letting everyone know what has happened so far and then things can be added as everything progresses later on.
The initial concern was the shape of Charlie's forehead and was noticed by our gp. He referred us to a pediatrician in Regina who got us in for X-rays right away. The X-rays came back inconclusive and we were then sent for a 3d CT scan. From this scan they were able to confirm that Charlie's metopic suture was fused. Our pediatrician then referred us to a neurosurgeon in Regina who told us that surgery would need to happen but that basically they are unable to do it in Saskatchewan and we were then referred to Stollery Children's Hospital in Edmonton, AB.
These past several days have been spent in Edmonton meeting with the neurosurgeon there and confirming the diagnosis made in Saskatchewan. Charlie has officially been diagnosed with Metopic Synostosis and trigonocephaly (from the family of Craniosynostosis). In short, a baby's skull is made of several plates that are not supposed to fuse together until they are older to allow for brain growth. The spaces between these plates that eventually fuse are called sutures. There are several different sutures in the skull and it is Charlie's metopic suture that has fused. The neurosurgeon told us his case is pretty severe and said surgery would be the best option. Also while in Edmonton, the neurosurgeon referred us to a pediatrician there to get Charlie's breathing checked, as he has always had that snort while breathing and often chokes while drinking his bottle. The pediatrician checked to ensure that both of Charlie's nasal passages are open and they were, but then referred us to an ENT to get a more in depth look. The ENT discovered that Charlie's nasal passages are fairly narrow through the mid range of his nose and would like to do a procedure while he is in surgery for his skull in order to widen his nasal passages. He will insert a ballon into the nasal passages and inflate it to widen them.
At this point, we have just gotten home from these appointments and are waiting to confirm a surgery date. The neuro would like Charlie to be at least 7 kilos before being put under general anesthesia, so we are looking at the end of April. We estimate that we will be in Edmonton for about 2 weeks.
Thanks for everyone's support!
The following information was written by Kelsey about Charlie's journey:
Hello everyone. I will start by letting everyone know what has happened so far and then things can be added as everything progresses later on.
The initial concern was the shape of Charlie's forehead and was noticed by our gp. He referred us to a pediatrician in Regina who got us in for X-rays right away. The X-rays came back inconclusive and we were then sent for a 3d CT scan. From this scan they were able to confirm that Charlie's metopic suture was fused. Our pediatrician then referred us to a neurosurgeon in Regina who told us that surgery would need to happen but that basically they are unable to do it in Saskatchewan and we were then referred to Stollery Children's Hospital in Edmonton, AB.
These past several days have been spent in Edmonton meeting with the neurosurgeon there and confirming the diagnosis made in Saskatchewan. Charlie has officially been diagnosed with Metopic Synostosis and trigonocephaly (from the family of Craniosynostosis). In short, a baby's skull is made of several plates that are not supposed to fuse together until they are older to allow for brain growth. The spaces between these plates that eventually fuse are called sutures. There are several different sutures in the skull and it is Charlie's metopic suture that has fused. The neurosurgeon told us his case is pretty severe and said surgery would be the best option. Also while in Edmonton, the neurosurgeon referred us to a pediatrician there to get Charlie's breathing checked, as he has always had that snort while breathing and often chokes while drinking his bottle. The pediatrician checked to ensure that both of Charlie's nasal passages are open and they were, but then referred us to an ENT to get a more in depth look. The ENT discovered that Charlie's nasal passages are fairly narrow through the mid range of his nose and would like to do a procedure while he is in surgery for his skull in order to widen his nasal passages. He will insert a ballon into the nasal passages and inflate it to widen them.
At this point, we have just gotten home from these appointments and are waiting to confirm a surgery date. The neuro would like Charlie to be at least 7 kilos before being put under general anesthesia, so we are looking at the end of April. We estimate that we will be in Edmonton for about 2 weeks.
Thanks for everyone's support!
Organizer
Amanda Dieno
Organizer
Central Saskatchewan , SK
