Living life to the fullest
Spina bifida is much more than a familiar word in the Craig and Kristine Boser household - it is an everyday way of life.
Their five-year-old son, Grant, was born with the disabling birth defect that affects approximately one of every 1,000 newborns in the U.S. yearly.
Given the fact that October is National Spina Bifida Month, the Bosers want to keep the awareness factor elevated about the affliction and its far-reaching effects by sharing a portion of their son's story. Fortunately, with the proper medical care, children like Grant can lead active and productive lives, be successful in school and actively involved in modified sports activities despite their physical challenges; and that's the message the Bosers would like to impart.
Spina bifida occurs within the first month of pregnancy, resulting in an incomplete closure of the spinal column. There are three types of the defect with varying degrees of seriousness. Grant was born with the most severe form, myelomeningocele, which occurs when the meninges (protective covering of the spinal cord) and spinal nerves come through the open part of the spine. What causes it is not known for certain, but it is believed to be genetically and environmentally driven. Studies have shown it can be prevented if women of childbearing age consume folic acid, a common water soluble B vitamin, prior to becoming pregnant and throughout the first trimester.
Grant's condition was detected through an ultrasound during Kristine's pregnancy. Born four weeks early, Feb. 1, 2002, in Minneapolis, Grant endured his first surgery in Children's Hospital when he was less than 24 hours old. The procedure was necessary to close the hole around his spine, in doing so, minimizing the risk of infection and preserving the existing function in the spinal cord. "Because his back was open so low, he has a lot of function, so that is a good thing," Kristine explained.
Hydrocephalus is also common with this type of spina bifida. Four days later Grant experienced his second surgery, when a shunt was inserted to drain excess fluid on the brain into the stomach cavity. Normally this fluid travels down the spinal column and is absorbed naturally, but in children with spina bifida the fluid can build up.
Grant spent 15 days in the hospital for these two surgeries, went home for four weeks, and then returned for a second 15-day stay for the insertion of a second shunt to drain fluid from the other side of his brain and surgery to alleviate pressure on his brain stem that caused breathing problems.
"We came home and he did really well until he was five months old," Kristine said. "Then both shunts failed, so we made an emergency trip. It's amazing how fast you can drive when you know they need to do brain surgery."
Doctors replaced both shunts and Grant returned home and managed to do well until this last June, when he returned to Children's Hospital in Minneapolis for tethered cord surgery that involved removal of scar tissue tugging on his spinal cord; and in August for surgery to straighten his foot.
All the while, Grant has also learned to live with other physical difficulties connected to the spina bifida, including bladder issues requiring medication and cathertization four times a day, a latex allergy, and 'absence' seizures where he stares off into space and you can't get his attention. "Three teenage girls drove with us and were talking away and we dropped them off at school and he didn't know they were with us," Kristine said.
He is on two medications for the seizures and they seem to be helping, Kristine noted. "He doesn't have the staring episodes as often, but then it's hard to tell, because I don't know if he's just ignoring us," she said with a laugh. "My other two do that so it is hard to tell," a reference to Grant's brother and sister, Andrew, 12, and Hannah, 10.
He also wears leg braces to help him walk, necessary because he has no feeling from his knees down, due to nerve damage from the spina bifida. His right foot is slightly club, so the braces hold his feet at 90 degree angles, making him able to walk.
Just last week, Grant returned to the Cities to have the cast removed from the August surgery, along with additional testing for his bladder difficulties. According to Kristine, this visit "went okay. Grant's bladder and kidneys are healthy, so that is great. The bad news is that he has the type of bladder that is always going to leak a little. We are changing the dosage on his medicine to see if that helps, otherwise we will have to look at surgery for him. His leg is another one of those good news, bad news situations too. The good news is that his cast came off and they didn't put a new one on. The bad news is that his leg is not healed and they didn't put a new cast on. I'm a little worried about him hurting his leg more and he won't even know it since he can't feel that part of his leg. We have to go back in another six weeks to have it rechecked, and he can't do any weight bearing on it until after that. So, it wasn't a bad visit, just not really what we expected."
Through it all, Kristine said that Grant "has been a little trooper. He's been living with spina bifida since the day he was born, so he doesn't know any different. Like any little boy his age, he can be stubborn, but he is usually very happy. The only thing he really dislikes is having blood drawn."
The Bosers have lived in West Fargo the past 6 ½ years. Kristine said the wonderful network of family and friends has been most helpful in seeing the family through the less-than-perfect times.
Here she mentions the love and support and countless 'babysitting' hours from her parents, Bill and Judy Ament from Valley City, and Craig's parents, Jim and Arlene Boser of Pierz, Minn.
"Our next-door neighbors, Lloyd and Joan Anderson are also just great," Kristine added. "Grant goes over there and plays with Lloyd and helps him with his work."
She offers similar sentiments for Craig's fellow workers at Moorhead Electric who have been supportive, as well as members of the electrical workers union (IBEW Local 1426), who donated materials for the handicapped accessible deck the Bosers built onto the front of their home that allows Grant the mobility he needs both when walking and maneuvering in his wheelchair.
There are a lot of people favorites in Grant's life, but ask him and he'll quickly tell you that his brother and sister are his best buddies, lending a helping hand, leading the way and playing with their little brother every opportunity they have, whether it involves the ever-magical transformers, watching Sponge Bob or Scooby doo, or playing touch football out in the yard. In fact, Grant is candidly earnest in saying "actually I have a best buddy. That's my brother Andrew, I like to do stuff with him."
His dad, Craig, is also high on this list. "I like to play Busy, Busy Builders with him whenever I can," Grant added.
Other special likes include wheelchair soccer that he recently played in a special league in Moorhead; and all his little stuffed animal friends, in particular, his beaver-buddy, with him since his second surgery stay; and when it comes to mealtime, mac and cheese, spaghetti and pizza.
He also has a fondness for school. "She's kind of fun," Grant said about his Kindergarten teacher Mrs. Evans. "I also really liked my old school Apple Tree. Every morning in preschool McKayla and I played animals."
School has also been good for Grant, Kristine said. He is getting along fine. Math is a little more challenging, and his hand strength isn't what it should be but occupational therapy is working to correct that.
As for what the future holds, the Bosers never really know, but are enjoying Grant every minute, one day at a time. "We always worry. But worry doesn't change it and make anything better," Kristine said realistically. "We worry more about the shunts and bladder problem than whether he can walk. If the shunt fails and it doesn't get caught, he could have brain damage and kidney failure."
Pointing out the innocence and acceptance of the situation, Kristine said that it was last summer that Grant finally noticed that not every kid his age didn't walk with crutches. "It was just a realization thing, and then he went on playing. He is totally happy and well-adjusted and usually a bundle of energy, and for that we are all remarkably blessed. What he is dealing with is what makes Grant the wonderful little boy he is!"