Bringing Up Brooke: Raising a Daughter with Dwarfism
One out of every 26,000 babies is born with achondroplasia, a form of dwarfism. My daughter is one of them.
When I became pregnant three years ago, I was excited. Even though the baby's father, Tony, and I had decided not to stay together, I had his support as well as that of my family. Because I was facing life as a single parent, I did worry about whether I'd be able to juggle a career and a baby on my own. But I started making plans for my maternity leave, prepared a nursery in my Illinois apartment, and chose a nurse-midwife for my prenatal care. At 16 weeks, I had my first ultrasound, which was fine. Then, in my seventh month, everything changed. The nurse-midwife noticed that I was getting very big and the volume of my amniotic fluid was increasing dramatically. She ordered another ultrasound to see what was going on.
I had the ultrasound about three weeks before my due date. First came the thrilling news that my baby was a girl. Then the technician said it looked as if there was something wrong with the measurement of the bones in her arms and legs. The problem was serious enough that I was immediately sent to see a perinatalist across the state line, at the University of Iowa Hospital and Clinics, in Iowa City. After another lengthy ultrasound, the perinatalist said that she suspected Brooke had some type of dwarfism, possibly achondroplasia, which meant, among other things, that her arms and legs would be proportionately smaller than the rest of her body and that her head would be larger.
The word achondroplasia was very foreign to me. I had been too surprised to write down what the doctor had told me; I remembered only that the word for Brooke's condition had started with an a. I was upset at the thought that my baby might look different, but I was mostly worried about whether I would deliver her safely. The doctor said her forehead was very prominent, a trait typical of kids with achondroplasia, and that her chin and nose seemed recessed, which could cause breathing problems. The doctors were also afraid that my water would break early because there was so much of it. We made plans for me to return to Iowa about two weeks later to discuss inducing labor.
Looking back, I can see that I was in denial about how serious this condition could be. I couldn't bring myself to learn more about achondroplasia at that point, although I accepted that it meant my daughter would be smaller than average. I just wanted to think positively and put things in the best perspective. I continued to work, trying to take my mind off what lay ahead. I drove back to Iowa City on November 12, 1998, with my parents. The doctors agreed that waiting might put Brooke's health at risk and decided to do an immediate C-section.
Fifteen doctors and nurses were in the room as Brooke entered the world. Six were specialists there for her alone, just in case she stopped breathing or developed other complications. With my stepfather, who was my labor coach, holding my hand, my daughter was born. I couldn't see her at first from behind the curtain, but my stepfather said she looked alert and beautiful, with ten fingers, ten toes, and a strong little chin. We thought that perhaps the doctors had been wrong after all. Then my stepfather went to tell our family, including Tony, my mom, and my aunts, the good news.
But we weren't out of the woods yet. After the delivery, Brooke went to the neonatal unit, and two days after her birth, a geneticist came to see Tony and me. "We've confirmed that Brooke has achondroplasia," he said. We still didn't understand -- we could see no characteristics that indicated she was different in any way. She seemed normal in size, her forehead didn't appear big, and her chin didn't look as if it was recessed.
We were given the name of a doctor at the University of Wisconsin at Mad-ison, Richard M. Pauli, M.D., Ph.D., a clinical geneticist and an expert on treating children with achondroplasia and other forms of dwarfism. I called and set up an appointment for Brooke in March, but I brought my daughter home still hoping that the diagnosis simply meant she would be a little short. Despite the fact that the doctor had confirmed her diagnosis, I still couldn't accept it. I know it sounds strange now, but I think I just wanted some time to bond with Brooke and absorb the situation.
No More Denial
Prior to the visit, Dr. Pauli's office sent me a lot of very straightforward literature that outlined all the medical facts about achondroplasia. Now I had to face the truth head-on. Shock and denial slipped away as I looked through all that information in front of me. I felt an enormous sense of relief. For the next few weeks, I spent my free time reading everything I could find on achondroplasia at the library and on the Internet. I found the Website for the Little People of America, a support group for people affected by different forms of dwarfism, and connected with other parents from all over the country. Dr. Pauli's office put me in touch with a nearby family whose 2-year-old son had achondroplasia, and I took Brooke to meet him. I was reassured to see that he was a healthy, cute, bright little boy.
Finally, the long-awaited visit with Dr. Pauli arrived. After a lengthy examination, he told me that Brooke's foramen magnum -- the small opening at the back of the skull for the brain stem -- was smaller than normal. He wanted Brooke to have an MRI immediately to see if her skull was "nicking" the brain stem and spinal cord, which could cause serious neurological damage. We discussed the possibility of decompression surgery, an operation to ease the pressure on Brooke's brain stem and spinal cord; in the meantime, I needed to watch for signs of neurological injury, such as seizure, and keep Brooke's head from moving around too much. Needless to say, this was frightening news. I was also referred to the local Easter Seals chapter, where Brooke started getting.
Life at Home
For months after Brooke was born, I was juggling health appointments, fighting with the insurance company for in-home nursing help (I couldn't use regular baby-sitters because Brooke's neck required special handling), and getting back to my job as a project coordinator for the engineering group at Kraft. My coworkers and boss were great; I was allowed to work part-time and from home. Tony, who lives in Wisconsin, came to many appointments with us and continues to see Brooke every week. He has been incredibly supportive. Family members who live near me were also a big source of support during those stressful first months.
Brooke is developing well both mentally and physically, though she is small for 30 months and people frequently mistake her for a much younger child. A year ago, she had the surgery to enlarge her foramen magnum, which was scary for Tony and me, especially because she developed a dangerously high fever right after the operation. But she's fine now, and doctors say the surgery was a success. She has a spine curvature called kyphosis in her lower back, which means that all her chairs have to be reclined to a 120 degree angle so she can sit comfortably. She's also learning to walk but probably won't be fully mobile until she's nearly 3 years old. This frustrates her, but she's got a strong will, and I know that before long she'll be running around just like other children.
In the meantime, she's learning new things every day. She loves looking at books and photo albums and listening to stories. One of our favorite things is snuggling up on the couch to watch Blue's Clues on TV. Dr. Pauli says I'm somewhat overprotective, and I agree with him. I do want to help Brooke become as independent as possible, but I still worry about her health.
Sometimes I get unpleasant reminders that my daughter is not like everyone else. A few ill-informed people who know that Brooke has achondroplasia have asked me if she's also mentally disabled. One day, I ran into an acquaintance who had never seen Brooke before. "Her head is so big," she said, and it hit me that my daughter is going to have to endure insensitive comments like this her whole life. Sometimes when I drive by our local grade school, I get teary-eyed at the thought of how kids will tease her. Children can be so cruel to anyone who's even a little different. The future holds a lot of medical challenges for Brooke too. But she should still be able to accomplish everything I want for her, including going to college and having a career and a family.
I hope she'll also live in a world that's a little more understanding. I have learned that people with short stature are just that-their capabilities are as limitless as those of someone of average height. I've become active with the Little People of America, because I believe it's important for Brooke to know kids who are like her. When Brooke starts school, I plan to talk openly to her class and teacher about dwarfism. My job as Brooke's mom is clear: to provide her with the confidence to do anything she wants in life.