First-Time Mom with Spastic Cerebral Palsy
|Ginni Buller, a first-time mom who has spastic cerebral palsy, is holding her 15-month old daughter.|
My name is Ginni Buller. I have spastic cerebral palsy, and I'm a 33-year-old new mom to a 15-month-old. I was diagnosed with cerebral palsy when I was 18 months old. I received physical therapy and occupational therapy throughout my childhood from age 4 to 14. I walk independently, yet I have spasticity in both my legs and arms that I choose to treat with exercise instead of medication. In addition to cerebral palsy, I have type 1 diabetes, and regulate my insulin with an insulin pump. I'm married to a wonderful man whom I met in 2001. After 2 happy years of marriage, my husband Kevin and I decided to have a baby.
Here's my story:
I planned months in advance for a healthy pregnancy, so that having a baby wouldn't hurt my child or me. I researched all my concerns about the potential effects of cerebral palsy and diabetes. Since cerebral palsy is not a hereditary condition, I was not concerned about my child having cerebral palsy, but I was concerned about how my body would tolerate pregnancy.
Living with cerebral palsy, I become accustomed to stiff muscles, a slight limp, and balance issues. One year prior to becoming pregnant, I arranged with my physician to receive regular physical therapy in order to help me loosen my muscles and strengthen my movements, such as my gait. The workouts seemingly stretched every muscle I had! In addition to the physical therapy, I joined Curves for Women and began exercising 3 times per week. After months of my exercise regime, I could detect a marked improvement in my gait and flexibility.
As a Type 1 diabetic, I also received an insulin pump the year before pregnancy, and began to follow a preventive program as if I were pregnant. I prepared and consumed healthy, balanced meals, and tested my sugar 7 or 8 times per day in order to become aware of target blood sugar levels for a diabetic pregnancy.
After I received the OK from my obstetrician and endocrinologist, my husband and I started trying. Four months later, I discovered I was pregnant. What an exciting day that was!! Ten weeks into the pregnancy, my husband and I announced it to our parents, who expressed their elation.
My monthly appointments with the high-risk obstetrician and endocrinologist were very positive and informative experiences. When I was 18 weeks pregnant, we found out we were having a girl! Kevin and I were on cloud nine! I continued my exercise plan and physical therapy to keep my muscles as limber and free moving as possible. After months of exercising, I began performing stretches on my own. In physical therapy sessions, the therapists regularly monitored my flexibility and range of motion. I was particularly careful while moving from sitting to standing positions and when walking.
Though I expected my balance to be off-kilter as my abdomen grew, I had few such problems. I fell 5 times or less during the 9 months of my pregnancy, and not because of the pregnancy, but because of cerebral palsy-related balance problems. I've been a professional at falling for years and usually fall on my knees, but fortunately the falls didn't cause a problem for the pregnancy. As a precaution, I borrowed a walker from my sister-in-law, but I never had to use it.
Throughout the pregnancy, I took added precautions to monitor my diabetes through regularly checking my levels of hemoglobin A1C, which is a 3-month average of the blood sugar. My levels ranged from 4.5 to 4.9. I monitored my A1C by checking my blood sugar almost every hour or two, especially later on in my pregnancy.
During my eighth and ninth months, my normal exercise plans became more difficult. After walking a half-mile, I would be out of breath. Consequently, I adjusted my exercise plan and slowed down. I decreased my exercise to 2 times per week, and depending on how I felt, I listened to my body and sometimes exercised less. I either went to Curves, walked on the treadmill for 30 minutes, or walked with my husband.
My original due date was June 18, 2005. Due to diabetes, the doctors decided to take me a week early. On June 10, I was induced at 9 a.m. By 12 p.m. that afternoon, I had dilated 2 or 3 centimeters. It wasn't long before they advised me to push. I pushed for 3 straight hours with little change. At that point, we decided to have a c-section. Cerebral palsy had nothing to do with the decision to have a c-section; Sarah was just too big to have vaginally. I was so tired, that I almost wasn't awake for the delivery, but I made sure that I was so I could hear that first cry. Miss Sarah Elizabeth Buller made her entrance into this world at 7:40 p.m., weighing in at 8 lbs., 8 oz. and measuring 21 inches long. All the hard work paid off: Sarah was perfect, and all her vital signs were fine.
I was so excited to have a beautiful baby girl! I don't remember much after her delivery because I was so tired and drifted in and out of sleep. I do remember the first time I held her, admiring the little features she had and the realization that she was finally here.
During my pregnancy, I decided to try breastfeeding. Through research, I learned that breastfeeding provides optimal nutrition for infants. The lactation consultant visited my room a couple times a day, and I soon realized that my finger dexterity caused me to have difficulty feeding her. However, little Sarah and I were a team, and by 3 months, she was receiving plenty of milk. As Sarah grew older, feeding became easier. She is now 15 months old and is almost weaned from breastfeeding.
I'm now a full-time mom, fully enjoying parenthood. Though I knew that I would experience challenges in handling a baby when we first discussed having children, the specifics of those challenges sometimes surprise me. For example, I must always ensure that I am balanced when I pick Sarah up. When I am holding her, I am cautious to lean against something sturdy in order to walk or turn around. Lifting her from her walker and jumper can also be challenging. It was initially awkward for me to lean forward with her to sit her down or to lift her. Yet each day I learn new ways to solve these problems. For example, I now stand beside the jumper or walker with one foot pressed in front, which makes my base wider and makes it easier for me to maneuver her.
I often need to adapt in order to accomplish the many tasks needed to care for a baby. For example, I have found that the most secure and comfortable way for me to bathe Sarah is to be in the tub with her. Kevin gets her ready for her bath and then hands her to me. I put a towel over my legs to minimize sliding. She loves to play in the water and enjoys splashing water all over the place. When she is clean and ready to get out, Kevin removes her, dries her off, and dresses her while I have some time for myself.
When we go on an outing, I have developed methods or adaptations to care for Sarah. For example, it's awkward for me to carry her in her car seat. (In fact, my mom and sister have a difficult time carrying her in the car seat, even though they do not have physical disabilities!) I can do it, but if Kevin or my dad is present, they take pleasure in moving her in and out of the car. It's easier for me to carry the car seat by both ends rather than by the handle. When I push Sarah in the stroller, I often use a cord to attach myself to the stroller so that if I fall, I won't lose the stroller. If my muscles are loose, I can walk while holding her in public, but I also hold onto Kevin or a friend for reassurance. Sarah has started walking, which has made it easier.
I recently resumed exercising, either at Curves or a wellness center, and am participating in physical therapy to improve my range of motion and flexibility so that I can keep up with Sarah as she becomes more active. I have lost all the weight that I gained during my pregnancy, which is also helping me to improve my balance. I am a strong believer in exercising, as I know that it is the key to having less tone. The less tone I have, the better off I am. Exercising will always be a part of my life, in addition to having cerebral palsy and being a Mom.
I know that we have just begun to travel the road of parenthood, and I look forward to years of raising our daughter. There may be some obstacles ahead, but I'm ready and willing to face them because my family and I know that with my determination and will, there is always a way! I enjoy the time spent with Sarah, and I feel so grateful to have been blessed with such a wonderful little girl!
The Buller family is looking forward to the arrival of their son, Edward Leland Buller in November 2008.
If you would like to e-mail Ginni for additional information, please contact NCHPAD at 1-800-900-8086 or firstname.lastname@example.org.
To see more of The Buller family, go to http://photobucket.com/albums/v518/GinniB/
Ginni now has a Facebook group called, "Mommies with CP." If any woman is planning on having children within two years OR if one is a mother, please feel free to join the group. Please answer the three questions in order to become a member.