Little Anna

We don't get to see our youngest granddaughter as often as we would like, because she lives with her family in Ohio. Little Anna Elizabeth is 13 months old, and Anna is truly a Little Person.

Anna

She was diagnosed with Hypochondroplasia, a rare type of short-limbed dwarfism, when she was just a few months old. When doctors suggested, even before she was born, that she might have dwarfism, Erin and Reed passed it off as another misconception about their family's relatively small stature. None of them are tall people, and both Erin and five-year-old Will were always near the bottom of their respective growth charts when they saw their doctors for well-child checkups. Doctors had voiced similar concerns before Will was born, but he does not have any type of dwarfism; he is just small for his age. 

Will, Erin, Anna, and Reed

Anna, on the other hand, has been in and out of the hospital since she was born, first for breathing issues, and then for focal seizures, which are manifested as repeated episodes of staring into space. Her doctors suggested genetic testing to determine the reason for her seizures, large head, and small stature. The tests showed that she has a spontaneous mutation on a particular gene, which has resulted in her specific condition; she did not inherit this, but each of her future children will have a 50% chance of inheriting it from her. Anna’s parents were relieved to finally have a firm diagnosis, because now they can give Anna all of the help she needs to reach her milestones and live a healthy, satisfying life.

Epileptic seizures are fairly common in babies with Hypochondroplasia, often disappearing by the time a child is two years old. Since Anna's seizures are not well-controlled with medication, she will soon be starting a special diet that has been shown to curb or even eliminate seizures for many people. We are praying that the new diet will help, and that she will eventually outgrow the seizures entirely.

Anna learned how to roll over before she could hold up her head. For a while, at an age where most babies are learning to sit, crawl, and stand, she rolled wherever she wanted to go. Because Anna's head is disproportionately large, she was unable to hold it up without assistance until just a few weeks ago. She couldn't sit alone, or even in a high chair, and until she was nearly a year old, anyone who held her needed to be careful to support her head.

Now that she can hold her head up, Anna is finally able to sit in a high chair and feed herself. 

Because her legs are so short, Anna has struggled to maintain her balance when she sits alone. That's why someone stays close by to provide some support when she is sitting on the floor. Her arms are so short that she can't get herself into a sitting position without help, and she wasn't able to pick up a toy until recently, because she couldn't bring her hands together in front of her. However, she learned to compensate by using her feet to pick things up and bring them to her hands while she is lying on the floor. This is illustrated in the pictures below. (In the second picture, she proudly snagged Grandpa Bill’s almost-empty paint can before he had a chance to open it.)

 

Soon after her diagnosis, Anna began receiving weekly Physical Therapy services to help her build up her core strength. She needs exceptional core strength to be able to hold up her big head, sit alone, and eventually walk.

Her au pair, Gabi, has been a God-send. Gabi agreed to move to the US to care for Anna before she was even born or diagnosed with special needs, so Gabi wasn't expecting to attend multiple appointments with Anna, or help Anna with exercises at home and provide the extra attention this tiny little girl has required. 

Gabi, Anna's au pair, is from Brazil. Like a foreign exchange student, an au pair is integrated into family life as a temporary family member. Gabi has lived with the family for a full year so far, and plans to stay for one more year. 

When we visited her family for Thanksgiving, Bill and I were thrilled to see Anna's obvious progress since we last saw her in July. She is a determined little girl who works hard to accomplish things that come naturally for typical babies. Her arms are too short for conventional crawling, but that doesn't stop her from army-crawling all over the room. She has been using a walker in Physical Therapy, and will be getting one of her own in January. Children with her diagnosis usually walk unassisted around the age of two, so using a walker will give Anna a little more independence until her body is ready to reach that milestone.

Army crawling

At 15 pounds, Anna is still at the bottom of the growth chart for both weight and height--and that's the special growth chart used only for kids with dwarfism. But she is a smart, verbal child, who already talks quite a bit. Now that she has three teeth, she has been trying to bite her family members, while grinning and saying plainly, "I bite!" On a more positive note, she is quite social, waving and saying "Hi" in both English and Portuguese, which is Gabi's native language.

Anna likes to tease her mom.

It can be difficult for parents and grandparents to watch young children struggle with different abilities and challenges, but we are finding out, first hand, what a blessing Anna is for everyone in our family. We are excited to watch her learn and grow, at her own pace. There is a quote, from Shakespeare's A Midsummer Night's Dream, that certainly applies to Anna: "Though she be but little, she is fierce." Or, in contemporary language, "She may be small, but she is mighty." I have no doubt that Anna, with God's help, will continue to work hard, reach her milestones, and live a full and fulfilling life.

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

Psalm 139:13-16