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.

Introduction

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.

Something's Wrong

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.

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