Hastings family stands for Chiari awareness
Two-year-old Caleb Maaske has been in and out of hospitals and doctors' offices since he was 2 months old.
Caleb, the younger son of Hastings couple Chad and Rachael Maaske, started getting croup and strider every time he got sick. He would wake up in the middle of the night not breathing. He sometimes had trouble swallowing, had poor balance, delayed speech development and other issues.
The Maaskes took Caleb to doctor after doctor to try to figure out what was wrong, but no one, it seemed, could figure it out. Most doctors seemed to think he had asthma, even though it didn't entirely fit the bill. Others just told them to wait, and that it would get better.
Finally, at the end of July last summer, the Maaskes took Caleb to the Mayo Clinic. Again, the first visit suggested allergies or asthma. In August, the doctor referred them to a pulmonologist. Caleb had severe reflux, but the pulmonologist had heard of something in the brain that could affect breathing, and he ordered an MRI.
The MRI came back with an interesting result. On Aug. 31, Caleb was diagnosed with a Chiari Malformation, a condition in which the base of his cerebellum descends down into his spinal column.
"His brain doesn't completely fit in his skull," Rachael Maaske explained.
A visit with a neurologist showed that Caleb's malformation was severe; the swelling was blocking spinal fluid.
The diagnosis led to a flurry of other tests and discoveries. Chiari can cause spinal problems like scoliosis and pockets of spinal fluid, so a spinal MRI was done. His airways were checked too, and they found he had a lot of damage done to his trachea. A rare effect doctors found in Caleb was something called an arachnoid veil, which wrapped around his cerebellum. Because of higher pressure, he had some scarring on his brain and some minor cell death.
On Oct. 10, Caleb had surgery to remove parts of the base of his skull to give his brain room and relieve the pressure. Between 2 and 4 millimeters of Caleb's skull were taken out.
What's scary for the Maaskes is that they have no assurance that the surgery will work the way they hope. It takes anywhere from six months to a year to know what effects the surgery has.
"Our hope and prayer is that this is it," Rachael Maaske said.
There's some hope already. The day after his surgery, Caleb said two words together for the first time, and his speech has really taken off since then, Rachael Maaske said. His respiratory issues seem to be improving as well. Caleb caught a cold right after his surgery, and while he used to have to take several breathing treatments, that first time he only needed a couple. When he got sick over Christmas, he didn't need any breathing treatments.
Suffering in silence
Chiari malformations are more common than one might think. They have about the same occurrence as Multiple Sclerosis, but because the symptoms aren't visible to anyone other than the affected individual, it often goes undiagnosed.
"A lot of people suffer in silence," Rachael Maaske said.
It's also rare for a child to be diagnosed at such a young age as Caleb, Chad Maaske said. Most people are diagnosed as adults, when they're old enough to tell what their symptoms are.
The Maaskes are stepping up to raise awareness about the disorder, so that the people who have it can find relief.
So far there's no cure, but research is being done.
The Maaskes are teaming up with a Red Wing family, whose son also has Chiari, to raise funds for research and awareness at a golf tournament event July 27. To register as a corporate sponsor or sign up to play, contact Heather Maskrey at 651-380-7797 or heather firstname.lastname@example.org.
The event is also an opportunity for people with Chiari or parents of children with Chiari to meet and support each other.
Funds can also be donated to the Caleb Maaske Benefit Fund, 14985 Glazier Ave. Suite 100, Apple Valley, MN, 55124-9822. Funds donated go to Conquer Chiari.