Hub Staff

Seven month old Madison Bob of Port Elgin looks like a normal and happy baby but just two months ago she was diagnosed with multi-suture craniosynostosis.

Craniosynostosis is a rare condition where one or more of the fibrous, elastic tissues, known as sutures, between the seven bones that make up the skull of a newborn baby, close too early, stopping the brain from growing properly.

Madison's mother, 22 year old Destiny Bob said that she is an active baby and is already crawling and starting to pull herself up. “She's a lot more advanced than some but you can tell she’s getting headaches now due to the pressure.” Bob added that Madison is now starting to grab her head more often and trying to bang her head on things because of the pain.

“She was 5 months old when it was diagnosed,” said Madison's Nana, Destiny's mom, Tasha Dadswell. “Her head was measuring small and not adding up so we requested a pediatrician.” Dadswell explained that an x-ray was taken of Madison's skull. “The x-ray did not come back good.”

The Hospital for Sick Children (SickKids) in Toronto lists craniosynostosis as occurring in approximately 1 in every 2,500 live births but Dadswell said that the condition is more rare in Madison's case because she has two sutures that have closed. “The one suture that she has closed is the coronal suture, that doesn't close until you’re 24 years old. Hers has closed at 5 months. She's got one that's actually open, two that are really small and two that are fused,” said Dadswell.

As stated on cappskids.org, a North American organization started by parents of children who have been afflicted with the condition, the coronal suture may begin to fuse by the age of 24 years but the average suture closes between the ages of 30 and 40 years old.

“Basically a baby has soft spots on her head and your skull is supposed to grow so those soft spots can and your brain can but hers are fused together so her skull can't grow so now her brain can't grow,” explained Dadswell. “What happens is her brain will build up so much pressure that without this surgery she will die.”

Dadswell said there are several appointments at SickKids ahead for Madison with her first being July 21. It is at this time the family is hoping to get a date for surgery. “From what the pediatrician told us, because she's got more than one fused, it’s going to be between one to three surgeries that she is going to have to go for,” said Dadswell. “With this type of surgery she requires a blood transfusion because she'll lose too much blood and she'll be for under seven to 12 hours...they're going to remove her skull, reconstruct it and put it back.”

Madison’s family is waiting to hear if an application to the Shriners has been successful to cover some of the costs but because appointments are only a couple of weeks away, and surgery is possibly soon, a gofundme page for Madison has been set up gofundme.com/help-for-baby-madisons-surgery to raise money for medical, travel and accommodation expenses for Madison and her family.

Donation jars are also currently available at Mary Browns Diner, Lord Elgin Fish & Chips, Circle K, New Orleans Pizza, First Choice Haircutters and Elle Shape in Port Elgin.

“Any donation would be great,” said Dadswell. “We don't drive so we have to pay a driver, we have to pay their gas, we have to pay parking and everything for Madison at the same time and that's just for each trip. It adds up very, very quickly and we don't have it.”

Dadswell said that there could also be a large expense of $3,000 after her surgery for a cranial helmet that Madison may have to wear. “They can't tell us until the end of her surgery, when it’s over, if she's going to require one.”

Accommodation is also going to be a big expense for the family. Dadswell said that they had tried to get accommodation at the Ronald McDonald House in Toronto but were unsuccessful due to wait lists. “Their wait list is astronomical. We’re not upset that Ronald McDonald House can't do it because we understand. They're swamped and they need a lot more funding,” she said adding that because they live over 50 kilometres away from the hospital they will need to stay in Toronto for a short time. “After Madison gets discharged we're actually required to stay in Toronto for two to three weeks depending on her progress because of how intense the surgery is.”

Dadswell said they will be taking pictures and keeping a journal of Madison's progress while she is at SickKids. “We want to do that for Madison and to let everybody know...what we're going through. She added that Madison's condition could be genetic and will be going for genetic testing to rule out a couple of different syndromes. “We want to document it for Madison if she ever has kids."