Family Life

7 Reasons The Hamills Are So Special

posted: 02/25/15
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What It's Like to Be Pregnant and Little

Though Dan and Michelle Hamill experience the same ordinary day-to-day parenting challenges most people do - like potty training and finding perfect Halloween costumes - their life is nothing short of extraordinary. The entire family, including their son Jack and twins Cate and Cece, was born with achondroplasia (pronounced ey-kon-druh-pley-zhuh), a form of dwarfism. We spoke with Ericka Okenfuss, MS, LCGC, a genetic counselor and skeletal dysplasia program coordinator at Kaiser Permanente to learn a little bit about the condition. Find out what makes the Hamills so normal and yet so unique at the same time.

1. They're actually in the majority (KIND OF). Achondroplasia is the most common form of dwarfism, and data shows that it occurs in anywhere from 1 in 15,000 to 1 in 40,000 newborns. Though those with achondroplasia are shorter in stature -- men have an average height of 4'4" and women at 4'1" -- the condition doesn't affect intelligence or life expectancy.

2. Most people with achondroplasia have average-sized parents. In fact, 80 percent of children born with achondroplasia don't inherit it - they develop the condition due to the mutation of a certain gene. As you can see on the show, Michelle's mom is an average height.

3. Jack could have been 6'2". OK, so the chances of that happening were slim, but it's possible! Two parents with achondroplasia can have average-sized children. When a person with achondroplasia plans to have children with a person who doesn't have the disease, there's a 50/50 chance their children will have achondroplasia. When both parents have achondroplasia, like the Hamills, there's a 25 percent chance the child will be average-sized and a 50 percent chance they will have achondroplasia.

4. Pregnancy can be risky. Though women with achondroplasia are at risk for the same complications as average-sized women, there is a unique danger. If both parents have achondroplasia, there's a 25 percent chance that the child will inherit the genetic mutation from both parents. And if that's the case, the outlook is bleak. "Homozygous achondroplasia, also called double dominance, is so severe that it's typically lethal," says Okenfuss. And most parents know if their child has homozygous achondroplasia before he or she is born. "Parents carrying a baby with homozygous achondroplasia will know by mid-pregnancy. By 20 weeks, [the fetus] will be strikingly off. Achondroplasia isn't seen until after 24 weeks."

5. Twins aren't rare. Cate and Cece are off-the-charts adorable, but they're not atypical. According to Okenfuss, the number of women with achondroplasia who become pregnant with twins is similar to average-size women (about 3 in 100). And because nearly all women with achondroplasia have cesarean sections anyway, carrying twins usually just affects mobility and the mother's center of gravity.

6. Healthy babies still need to be watched. "There are a fair number of potential risks that should be monitored, so that if they do occur, the child can get experienced care," says Okenfuss. Namely, kids with achondroplasia are at risk for respiratory issues, like sleep apnea, as well as neurological conditions. And in general, they may hit certain developmental milestones later than their peers. "Their center of gravity is so different, so they may walk later, or do it a little differently," says Okenfuss. "But the vast majority catch up and end up being able to do what most of their peers can do."

7. The physical challenges are actually the easy part. "One of the biggest things, often the hardest part, of achondroplasia is social and environmental," says Okenfuss. "You are living in a world that isn't built for you and you must overcome physical obstacles every day." She also states that the social stigma from being different - and the people who point, stare and take photos - is often trickier to navigate than anything you deal with in a doctor's office.

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