Skull Surgery for Baby Sequoia
Donation protected
Hello, my name is Jennifer. I am a young mother of 4 who lives in Northern California. My Partner Trey & I just brought our precious baby boy Sequoia into the world on July 27th 2021.
We were overwhelmed with joy to be finally holding our sweet baby in our arms but it didn't take long for us to notice that his head had an unusual shape and with the guidance of our amazing midwife we decided to look into what might be the cause.
Thanks to our prompt attention and concern for our little man, Sequoia was diagnosed with Trigonocephaly (Metopic Craniosynostosis) before he was even 1 week old.
A baby’s skull is made up of several large bones connected by flexible structures called sutures, These flexible sutures allow the brain to grow. Craniosynostosis occurs when a suture is missing or closes up too soon. That causes a deformed head shape and prevents the brain from having enough room to grow.
So ultimately, Sequoias skull fused together prematurely and will need to be operated on in order for his brain to have room to grow. If he were to not get the surgery he needs within the proper time frame he would end up going through immense amounts of pain and brain damage.
Early diagnosis is one of the most crucial components for success in the lives of children with Craniosynostosis, so despite the severity of his diagnosis it truly is the best case scenario that we found out as soon as we did.
One of the other main factors for success in his case is having a good surgeon and we just so happen to be lucky enough to live within driving distance from the nation's leading brain surgeon for children with Craniosynostosis; Doctor Peter Sun at the UCSF Benioff Children's Hospital in Oakland.
Another positive aspect to the situation is that Doctor Sun just so happens to be one of the only doctors in the nation who can perform what they refer to as the "minimally invasive" surgery that has a much higher success rate and is a lot less traumatic than the conventional method of surgery for this specific diagnosis. This is another aspect where the early diagnosis really plays in Sequoias favor as the "minimally invasive" surgery can only be performed on infants around 3 months of age, before they get too old and the bones of their skull become too solid for this method. We are very confident in Dr. Sun's ability to perform this surgery successfully as he has not had one single patient who has undergone this method of surgery needing to come back for any further surgeries in the future unlike the other more invasive method of surgery.
Sequoia is already all set up with the team over at UCSF Benioff Children's Hospital in Oakland and we will get to go meet the surgeons and the team over in the Craniosynostosis Program starting early September, that is also when he will go in for his first brain scans, then by early October he will be ready to go in for his surgery.
After his surgery and his stay in the hospital is completed, Sequoia will be given a helmet to wear to help shape his head properly, throughout that process we will be needing to commute down to the bay area weekly in order for his helmet to be adjusted. The helmet therapy phase of his journey may take up to 6 months of weekly appointments and it will be over 400 miles round trip for us each week. It is also looking like we will be responsible for around $10,000 of medical bills but the rest of expenses will thankfully be covered by his insurance!
We are reaching out for support in order to make sure we are capable of paying for Sequoias medical expenses, travel expenses, and expenses for moving and replacing our furniture.
Due to our 2 year old son Sage having some health issues we recently discovered that our current home is infested with black mold that has been causing health issues in all of us but it's effecting the youngest children most severely. We are doing everything in our power to get our family into a new clean living space and with Sequoia's diagnosis and him having to have a major surgery we are even more pressed to get into a clean place for him to come home to after his surgery. He is going to need a mold free invironment to recover in where his underdeveloped immune system won't be already overwhelmed fighting off toxic mold. When we move we won't be able to bring along our furniture because of the mold so any and all donations are greatly appreciated!!
Both Trey and I are artists and supporting either of our small businesses by buying a tie dye, some hand made jewelry or crystals is just as much appreciated as a donation!
We were overwhelmed with joy to be finally holding our sweet baby in our arms but it didn't take long for us to notice that his head had an unusual shape and with the guidance of our amazing midwife we decided to look into what might be the cause.
Thanks to our prompt attention and concern for our little man, Sequoia was diagnosed with Trigonocephaly (Metopic Craniosynostosis) before he was even 1 week old.
A baby’s skull is made up of several large bones connected by flexible structures called sutures, These flexible sutures allow the brain to grow. Craniosynostosis occurs when a suture is missing or closes up too soon. That causes a deformed head shape and prevents the brain from having enough room to grow.
So ultimately, Sequoias skull fused together prematurely and will need to be operated on in order for his brain to have room to grow. If he were to not get the surgery he needs within the proper time frame he would end up going through immense amounts of pain and brain damage.
Early diagnosis is one of the most crucial components for success in the lives of children with Craniosynostosis, so despite the severity of his diagnosis it truly is the best case scenario that we found out as soon as we did.
One of the other main factors for success in his case is having a good surgeon and we just so happen to be lucky enough to live within driving distance from the nation's leading brain surgeon for children with Craniosynostosis; Doctor Peter Sun at the UCSF Benioff Children's Hospital in Oakland.
Another positive aspect to the situation is that Doctor Sun just so happens to be one of the only doctors in the nation who can perform what they refer to as the "minimally invasive" surgery that has a much higher success rate and is a lot less traumatic than the conventional method of surgery for this specific diagnosis. This is another aspect where the early diagnosis really plays in Sequoias favor as the "minimally invasive" surgery can only be performed on infants around 3 months of age, before they get too old and the bones of their skull become too solid for this method. We are very confident in Dr. Sun's ability to perform this surgery successfully as he has not had one single patient who has undergone this method of surgery needing to come back for any further surgeries in the future unlike the other more invasive method of surgery.
Sequoia is already all set up with the team over at UCSF Benioff Children's Hospital in Oakland and we will get to go meet the surgeons and the team over in the Craniosynostosis Program starting early September, that is also when he will go in for his first brain scans, then by early October he will be ready to go in for his surgery.
After his surgery and his stay in the hospital is completed, Sequoia will be given a helmet to wear to help shape his head properly, throughout that process we will be needing to commute down to the bay area weekly in order for his helmet to be adjusted. The helmet therapy phase of his journey may take up to 6 months of weekly appointments and it will be over 400 miles round trip for us each week. It is also looking like we will be responsible for around $10,000 of medical bills but the rest of expenses will thankfully be covered by his insurance!
We are reaching out for support in order to make sure we are capable of paying for Sequoias medical expenses, travel expenses, and expenses for moving and replacing our furniture.
Due to our 2 year old son Sage having some health issues we recently discovered that our current home is infested with black mold that has been causing health issues in all of us but it's effecting the youngest children most severely. We are doing everything in our power to get our family into a new clean living space and with Sequoia's diagnosis and him having to have a major surgery we are even more pressed to get into a clean place for him to come home to after his surgery. He is going to need a mold free invironment to recover in where his underdeveloped immune system won't be already overwhelmed fighting off toxic mold. When we move we won't be able to bring along our furniture because of the mold so any and all donations are greatly appreciated!!
Both Trey and I are artists and supporting either of our small businesses by buying a tie dye, some hand made jewelry or crystals is just as much appreciated as a donation!
You can find Treys Tie-Dyes at https://en3ogenic-art-and-apparel.myshopify.com/
Or contact us directly for customs!
Thank you so much to all who have taken the time to read our story, we appreciate any and all types of support In these difficult times weather it be a donation, sharing the gofundme or even just sending good vibes and prayers for good health and healing our way!
Thank you so much to all who have taken the time to read our story, we appreciate any and all types of support In these difficult times weather it be a donation, sharing the gofundme or even just sending good vibes and prayers for good health and healing our way!
Organizer
Jennifer Phillips
Organizer
Oroville, CA