My husband and I were married in June of 1993. Since I have epilepsy, we asked three different doctors if it were okay for me to get pregnant. All of them gave me the green light, however, my neurologist suggested taking LARGE doses of folic acid for six months prior to getting pregnant. So I did. I took a larger amount than is in the prenatal vitamins. Instead of 800 micrograms, I took 2 milligrams. What your body doesn’t use, it just gets rid of. I am SO glad that I did. What I didn’t know at the time, since I knew nothing about spina bifida, was that the spinal column is developed by the time the baby inside you is only 23 days old. By then you don’t even know that you are pregnant yet. THE BEST TIME TO TAKE THE MEDICINE TO REDUCE THE SEVERITY OF NEURAL TUBE DEFECTS IS PRIOR TO GETTING PREGNANT!
Then I got pregnant. Unfortunately, I had a miscarriage with our first child. One month later I was pregnant with our son, Peter. He was conceived in March. At 16 weeks, they asked if I wanted to have an AFP test done. This stands for Alpha Fetoprotein. My first reply was ABSOLUTELY NOT! It doesn’t matter what is wrong with this child, we want to have it no matter what! Then my doctor said that some people have the test done so that if there is something wrong, you could be better prepared. Then I agreed. Since it is only a blood test, it couldn’t hurt the baby. Oh, how GLAD we ALL are that I changed my mind. The blood test came back positive, showing a high level of protein in my blood. The doctor, who I don’t see anymore, called and very bluntly said, “Oh, by the way, your AFP test came back positive which means that your baby might have spina bifida. You need to verify this with a high-level ultrasound at the hospital tomorrow.”
Somewhere deep inside, I knew she was right. My neurologist had said that there was a 2 percent chance that I could have a child with spina bifida, but he also said that there was a 2 percent chance that a person without epilepsy could also have a child with spina bifida. The first thing I did was cry! I didn’t even know what spina bifida was. I just knew it was something bad. Then, still in tears, I called my neighbor, who is a very good friend, and told her what happened. She said to call Jon, who is a letter carrier, and delivers out on a route somewhere, and have him come home, which I did, and they found Jon on his route and he came home.
The next day we went for the high-level ultrasound at the hospital. We found out two things at once. We found out that he was a boy, and we found out that he had spina bifida. As hard as it was finding out, we are EXTREMELY THANKFUL to the Lord for having the AFP test, which I wasn’t going to have done. Here’s why. If I hadn’t had the AFP test done, we wouldn’t have found out that Peter had spina bifida. Becoming a mother for the first time can be a huge adjustment, not to mention finding out that your child now has special needs and will continue to have special needs as long as he lives. I would have planned a normal birth at 40 weeks, but since we knew he had spina bifida, we had a planned c-section, two weeks earlier, so I wouldn’t go into labor. Having a normal birth could have killed him, or severely impaired him. Since we knew, I had a planned c-section at 38 weeks, and a neurosurgeon operated on his back the day he was born. He was in the hospital for 20 days. He was hooked up to an I.V., about to go to the operating room again, to have his head shunted, and they hadn’t looked at his head ultrasound. There was NO hydrocephalus. The Lord often uses seemingly insignificant actions as a means to impact the lives of people. It may have been due to the HIGH dose of folic acid that I took PRIOR to getting pregnant that was the reason he had no hydrocephalus. This is very unusual. Experts on spina bifida have said that 90 percent of children with spina bifida have their head shunted due to hydrocephalus. This can lead to other medical problems. It can also require future surgeries and there can be other complications.
The reason I mentioned all of this is to let you know that what we found out may help you. It is very important to take high doses of folic acid PRIOR to getting Pregnant. People, who prior to Peter being born, didn’t want to take the AFP test for the same reason that I didn’t want to at first, because they wanted to have the child, no matter what might be “wrong” with it, have changed their minds for the same reason we did. In case something IS wrong with the child, they could be more prepared. The sad part is that some people do it for the wrong reasons. Having the AFP test done might have been what the Lord used to make a difference in whether our son would be alive today. It’s hard to imagine what life would have been like if the Lord hadn’t given us our son! He has brought us, and many others much joy in his happy disposition. He loves people and it shows. That is what REALLY counts. The Lord has given us a child with special needs who is exactly that—VERY SPECIAL!
He was born in November of 1994, and is seven years old. He has had 12 surgeries, and we have gone to thousands of medical appointments. He uses a walker and crutches to get around. Sometimes, after surgeries, he uses a wheelchair. He was in Challenger Softball. He and his dad go to Boys Brigade at our church. We are homeschooling him, not because of spina bifida, but because that is what we wanted to do if the Lord were to give us a child. He goes to a science class, and is taking piano lessons. He is very musically inclined. He LOVES to sing! His daddy has been a real trooper with Peter. He has made a jungle gym, parallel bars, and stairs to help strengthen his legs. He bought him a great bike, which he loves to ride. He does a lot of things that mommy wouldn’t think of. We want him to be as normal as he possibly can be. That is what we were doing when we met Mr. Sam Wilson at the Winston Cup Preview. We were doing what Peter enjoys. He really enjoys racing, just like his daddy. Mr. Wilson approached us with tears in his eyes, and was touched by Peter (and the feeling is mutual). Mr. Wilson let Peter sit in a Winston Cup Car, and took lots of pictures. Then he sent us the copies. Then he asked if Peter could be a poster child for his racetrack, “Fairlane Acres”. We agreed. Mr. Wilson has done a lot of things over many years to help out children, and his love for children is obvious. He may not have young children of his own, but he knows a LOT of children who love him like a father because of his love and concern for them. Mr. Wilson did a lot for the special night at the track on April 20th. Peter’s version of the National Anthem was played after practice. We walked around the track and about 90 people joined us. He got to ride in a Winston Cup Car with his daddy. He went to the top of the flag stand! He even got to ride in a go-cart! If that wasn’t enough, Mr. Sam gave him a trophy that was almost two feet tall! He just doesn’t seem to stop giving for others.
We strive to make Peter’s life just as full and complete as any other child. We encourage his independence as much as possible. He is only seven, so there is a lot he hasn’t learned yet, but he is eager to learn. Our prayer is that Peter personally benefit from all of the moral and spiritual training we are trying to teach him, and that he would in turn be of benefit to others. We also pray that he be as independent as is possible for him, and to be a productive member of society. The bible says “Godliness is profitable for all things, having promise of the life that now is, and of that which is to come” (1 Tim 4:8). Having a child with special needs is a lot of work in some ways, but it is ALWAYS worth every ounce of work we put in because the reward is far, far GREATER for us and for others!
We hope that this might encourage some, and prepare others, who too, might have a “special” child of their own someday. We have yet to find any parent of a child with special needs who has not told us, or shown us by their expression, that they are so glad that they were given the child they have! We as parents believe that we have truly been blessed by our son, in more ways than we can count! He is such an encouragement to us both, and he loves life, and he loves people!
Sincerely,
Jon and Joan Franson