“When I gave birth to Thomas, he weighed 11 pounds — he was a huge baby! However, when he was two or three years old, he weighed 22 pounds; he had only doubled his weight, even though he was a good eater. I have three children and I’m a nurse, and I knew that it was practically impossible for him not to be gaining weight.
When he was four, he wore size 18 months clothes. He was really small, and he was starting to be aware of it. It was hard to find clothes for a child who was starting kindergarten in the babies’ section! Everybody was still saying, “What a beautiful baby!” when he was five years old. He’d come home from kindergarten and tell me, “I’m the smallest one in my class and everybody asks me ‘How come?’” It’s no fun being the smallest person in the school. Kids are rough with each other despite our efforts to teach them against bullying. There are always two or three children who pick on anyone who’s different. It’s tough to start school, a new environment with new people, and already be stigmatized. I didn’t want that for my son. I tried to put myself in his place — when you’re very small, do you see things as bigger than they are? Is it scary?
We had to fight for a long time to find answers. I spoke about my concerns with the physicians I worked with, and I made an appointment with my family doctor. First, Thomas’s lack of growth was chalked up to genetics, because I’m not very tall, although my husband is 6’1”, and I have two other children who are closer to “average” size. Then, we were sent to a nutritionist… Finally, we saw an endocrinologist who gave Thomas a full set of tests. The results: zero growth hormone.
Download the growth hormone deficiency guide.
After his diagnosis, he was taken on by an extraordinary medical team. His treatment journey started with multiple injections a week. It was a lot for a child of five or six years old to get a shot every day, and it wasn’t always easy to make him understand. He cried, he said he didn’t want the shot, he hid in his room… it was always a long fight. We found it hard as well, because we had to carry the medication around in a large bag with ice packs. When we got access to innovative treatment options, the number of injections decreased and it got much easier. We feel blessed for our access to these treatments. Now, it’s part of his daily life, especially since we’re seeing the results! Thomas has doubled his height and weight; he grew eight inches in just one year. He’s in line to be taller than his older sister. He’s turning 10, and he’s going to be able to dress like a 10-year-old. It took him a very long time to learn how to ride a bike — his balance wasn’t great and he was afraid of everything. Now, he does it all — running, biking, rollerblading, absolutely everything.
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It's important for us to include him in the decision-making process. We make the decisions for his well-being, we’re the parents, but it’s his life and it’s important to have his free and informed consent and to make sure that he understands what’s going on with his own body. I want him to understand what is involved and to ask questions.
Growing has had quite an effect on his self-confidence. He was more introverted and isolated before, because when you don’t have confidence in yourself you don’t approach people. Other people didn’t necessarily push him aside. I think he did it to himself because he had no self-confidence. I felt that was a pity because Thomas has a lot to offer. He’s a great person, he’s nice, he’s respectful. Now, he has regained confidence. He sticks up for himself. If something happens, a conflict with a friend, now he speaks up because he is confident. Without confidence you don’t get anywhere in life. All I really want for my children is that they accept themselves, that they feel good about themselves, and that they do what they want to in life. If that happens, my work as a parent will be done.
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