Bringing awareness for Craniosynostosis
Mackie Halcom has just passed the six-month mark of his young life, and by seven months, he will undergo surgery for a rare condition called craniosynostosis.
Mackie has a specific type of craniosynostosis called scaphocephaly (or dolichocephaly) — also called sagittal synostosis. It is the most common type of craniosynostosis and occurs when bones in an infant's head fuse together abnormally.
"It's a condition that occurs when the sutures in the skull close too early," explained Amanda Bertini, mother of 7-month-old Mackie.
Her son was recently diagnosed with the condition and is awaiting surgery.
"Sometimes they can close before birth, but usually they close after birth," Bertini said.
The coronal suture is a joint which ties together the skull's frontal and parietal bones.
The condition can affect the brain and skull and prevent them from growing normally and correctly. Craniosynostosis can cause pressure in the child's head if untreated and can bring about issues with nerves in the body.
Mackie's journey with craniosynostosis began when he was born.
"I fought and fought to have him seen by a specialist because I knew something was not right with my little guy's head," Bertini said.
Mackie will see his specialists on Feb. 5 to get tests on his heart and to ensure that he is stable enough for surgery. If all goes well, on Feb. 25 he will undergo surgery for his sagittal synostosis.
There are two main kinds of surgery for craniosynostosis, but the surgery Mackie will be going through is called CVR. This prevents chances of having follow-up surgeries.
"We are hoping it is going to be a one-and-done thing, and we don't have to worry about that," Bertini said.
A friend started a GoFundMe account for the family expenses related to the surgery. Although insurance will cover most of the surgery, the family will have to stay in Portland, Oregon, for about a week. Mackie's dad also wants to be there and will need to take time off work. There will be follow-up trips to Portland, too, and Bertini said the family has taken several trips already.
"Donations are always welcome, but prayers are really all I care for," she said.
Her real focus is spreading awareness of craniosynostosis. Mackie was diagnosed early, and Bertini connected with a parent support group, Cranialkids.com, which has been a source of support and information for her throughout their ordeal.
"It's been awesome," Bertini said. "It has helped a lot, and there are so many successful stories with their kids going in for surgery. It's absolutely terrifying for this to even happen to our family. We have so much support and so many people that I don't even know have already donated some money, and I am so thankful for that."
She said that the experience has helped her see how many good people are out there and have been there for them.
"It's a really crappy situation, but my heart is full, with these people who have reached out to us, because it's just awesome."
For the support group for craniosynostosis, go to Cranialkids.com
For Fundraiser for Mackie Halcom
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