Dwarfism Awareness Month: A Recap
October is Dwarfism Awareness month. Lately it seems every cause has a month to raise awareness, and I am sure most of you reading this have several that are meaningful to you. For us, this month is a way for us to encourage the celebration of differences, to educate others about Dwarfism and to share our story. I have made a commitment to opening up a window into our lives so that everyone can see Mira's challenges, triumphs and everything in between. For the next 31 days, I will be posting once a day about living with and learning about Mira's form of Dwarfism, Achondroplasia. What sets Dwarfism apart from the other important causes out there is that no cure is needed, however acceptance and understanding most certainly is. I am not an expert…not on Dwarfism, advocacy and certainly not parenting. However, I know it's best to just keep it real. Openness and honesty are rare, just like our sweet Mira Joy.
This image represents the beginning of our journey with Mira's diagnosis. It was taken during my routine 28 week ultrasound. The ultrasound technician discovered her long bone measurements were falling several weeks behind her gestational age, while her head measurements were several weeks ahead, both a cause for alarm. I get asked a lot if this could have been detected earlier. The answer is an unequivocal no. This is a condition that does not show itself until well after the more common 20 week ultrasound. I just happen to be a patient of an OBGYN practice that checks in (via-ultrasound) at the 28 week mark. Most of the women I have met along the way did not receive a diagnosis until the very end of their pregnancy, if at all. Some of them received it at delivery, some weeks later. I think a lot about which would have been easier for me, getting 3 months, or 3 minutes notice, but what's the point? The baby in this image turned out to be Mira, and Mira, turned out to be remarkable.
One of the first details I noticed about Mira when she was born was her chubby little fingers which she continues to be fascinated by today. She is constantly playing with her fingers and staring in awe of her hands. Trident hands (also called starfish hands) is a characteristic almost exclusive to Achondroplasia and can be seen when the fingers are fully extended. The pinky and ring finger and the index and middle finger sort of diverge, giving the hand a three-pronged, trident appearance somewhat resembling a starfish. Take a good look at those beautiful hands and those tiny fingers. There are several people wrapped around them. I am one of them.
The first question people usually ask me is: Does dwarfism run in your family? The answer is no, and chances are it doesn't run in yours either. Only 1 in 25,000 babies are diagnosed with Achondroplasia, ours just happened to be one of them. 80% of babies born with dwarfism are born to average-height parents and are the only little person in their family. If Mira chooses to have children, her odds of having a child with Achondroplasia are much more likely.
Children with Achondroplasia typically run behind schedule in reaching the "usual" developmental milestones. This is due to an overall decreased muscle tone, and larger head size, especially compared to rest of their bodies. In addition to her very own growth chart, Mira has her own developmental timetable created for children with Dwarfism. After receiving clearance by her surgeon post-decompression surgery, Mira began a weekly physical therapy session to aid in the development of her gross and fine motor skills and build up her strength. One month in and she is rocking it. She loves the new environment, fun new toys and especially her therapist Megan's sparkly necklaces and upbeat renditions of "Old MacDonald." We were fortunate to find a local therapist with extensive experience with Achondroplasia. Most importantly, Mira approves of her.
Meet Lizzy. She is 3 months older than Mira, lives in Washington D.C with her mom and dad and loves ice cream, her doggies and giving lots of kisses. Lizzy's mom, Kathryn and I were strangers not too long ago. Somehow, we managed to find each other and became friends. We are both raising daughters with dwarfism (who look happen to look remarkably alike). We have our own stories, our own challenges and our own triumphs. We also have each other, and that, is pretty special.
Today's 85 degree October day made an appropriate segway to this interesting fact: Children with Achondropalsia run a higher than average body temperature and in their first few years may experience increased levels of sweating. This is certainly the case with Mira. It was hard to tell at first since she was born in July, but once her first Fall creeped in, we noticed just how hot and sweaty she would get. We have learned to accommodate this for the most part, trying to keep her environment as cool and comfortable as possible. We take a portable fan with us wherever we go, keep her bedroom cool and ceiling fan on and we never overdress her. Footed pajamas and fleece are the enemy. Mira's happy places are: oceanfront with a breeze, my parents house (where it is always a crisp 63 degrees) and floating around in our pool for hours on end.
During those first few weeks after Mira's arrival, Evan and I discussed the ways in which we could make our home a more comfortable environment for her, by providing as many adaptive accommodations as necessary. We were told to just take one day and one situation at a time and that has worked in our favor so far. Something else that has worked in MY favor is having a husband who is creative, innovative and can tackle any household renovation with a YouTube video and a trip to Home Depot. Any "issue" we have run into he has been able to solve with everyday household items. We call it "Mira-proofing." Above, are just a few examples of his handy work for Mira. 1.) When you are born during a sweltering summer, but can't quite fit properly into a float. Enter Daddy with the inflatable bathtub/towel/umbrella/pool float combo and you can snooze/float peacefully in the shade while the rest of your family enjoys the pool. 2.) When you love sitting/eating in your high chair, but your lack of head control and overall poor muscle tone have you sliding all over the place. Enter Daddy with some non-stick shelf liner, a scissor and some duck tape. Viola! 3.) When you sweat profusely in the carseat (see yesterday's post) and you frequently take an uncomfortable 90 minute drive back and forth to Delaware. Enter Daddy with a dryer hose and some painter's tape and you have your own personal AC for the ride. While I realize these modifications will get increasingly more complicated as Mira gets older, I am confident that our family will do everything we can for her. Even if it involves duck tape
There are two types of sleep apnea, obstructive and central, both of which are common occurrences in children with achondroplasia (and other forms of dwarfism). Mira has obstructive sleep apnea (the more common one), which means something is partially blocking her upper airway. Her doctor's think her blockage is related to a combination of low muscle tone and upper airways that are smaller than average. To diagnose and treat sleep apnea, a sleep study must be done every few months to stay on top of it. Mira had her first sleep study in the NICU, her second at 3 months old and her third back in August. While the pictures look awful, it is not a painful procedure, just not very comfortable (for any of us). The set up includes: a sensor that measures oxygen placed on the toe , small plastic prongs at the nose that measure exhaled air, cloth belts for the the chest and stomach, stick-on electrodes on the face and chest to measure eye movements, heart rate and muscle tone during sleep and finally about 15 more electrodes are glued to the scalp to measure stages of sleep. The whole set up takes about 30 minutes, and then you just sit back and pray she sleeps.We are currently consulting with the pulmonary department at A.I. DuPont Children’s Hospital and Mira will go for her fourth sleep study next month. We are hopeful for better results.
Mira is no different, cognitively speaking, from her peers. Dwarfism does NOT impact a person's intelligence. This is one of the most widely misunderstood facts about Dwarfism. In fact, little people often develop a sense of ingenuity because they often have to find clever ways of doing things in an average-size world. We are already seeing the innovative ways in which Mira moves her body, feeds herself and plays with her toys. She's a smart cookie and we love watching her learn!
Today is our 8th wedding anniversary. We let Ellie stay up late to watch our wedding video. We watched every moment together. Ellie's favorite part was "hearing mommy and daddy read to each other." Our vows. I remember saying "while I don't know how our story would unfold, I knew that with you in it, it would be a great one." I think about that sentence a lot, especially as it pertains to Mira. Our journey with her, our story, is one that we could never have predicted. Marriage is hard. Parenting is hard. Parenting a baby with complicated medical needs is really really hard. I have 1 simple fact for today. I made the smartest decision of my life when I married that guy. Happy Anniversary baby.
"Do you watch the little people shows?" A question I got today over lunch. I've been asked this several times and the simple answer is yes, some of them. But, after having Mira, my feelings became more complicated. At first, shows featuring little people were interesting, educational and compelling television. The American public didn't get much exposure to the life of a little person outside of what was seen in movies (think Verne Troyer and his pinky). But with each subsequent series, it becomes less about learning and plummets into, "Look, little people doing stuff!" We really only needed one show (a toss up between The Little Couple and Little People Big World) to guide the viewer through the world through the trials and tribulations of how little people live their lives. Did you know that since 2006, there have been over 10 shows about little people in the US alone? Each subsequent show feels slightly more exploitative to me. My hope is that the "trend" of little people on television can lead to a more permanent re-positioning of little people in mainstream society. Nothing stays "in" forever, especially when it comes to media, but hopefully the awareness will be permanent.
Dressing Mira can sometimes pose a bit of a challenge. Baby clothing companies are pretty straightforward with their sizing. Most children are either right on target with their age/size, or slightly behind or ahead (like Ellie who is a 5T, but not quite 5 yet). Over the past year, I have learned what works well for Mira (onesies, capri pants, 3/4 length shirts, large neck openings, breathable material) and what doesn’t (jeans, 2 piece outfits, small neck openings, footed pajamas, fleece). I've also learned what brands work: Carters, Cat & Jack (Target), The Children's Place, The Gap. I've also mastered the sleeve/pant roll. We have a slight advantage with the dozens of bins of Ellie's old clothing we kept organized (thank you #evansocd) so we can experiment with sizing and mix and match pieces. Just shy of 15 months, Mira wears a 6-12 months top, with a 3-6 month bottom. 📷 styled by The Gap
Achondroplasia causes incredibly flexible AND rigid joints simultaneously. The joints of the knee, for example, are capable of extending beyond what would normally be considered their regular stopping point. On the other hand, the elbow joint is very rigid and difficult to control when this condition is present. Mira enjoys pulling her feet straight up with little to no bend at the knee. It is pretty amazing to watch!
The 'M' word. Did you know that the word 'midget' is considered highly offensive? Midget is derived from the word “midge," meaning a small, blood-sucking insect. The word traces back to the circus sideshows of the 1800s, when it was used to refer to short-statured performers for public amusement. Freak shows. Imagine for a second your own child being compared to an insect, or a freak show, simply because of one chromosome in their genetic makeup. Simply because God made them small. If this is a word you use, even as part of a joke, even to casually refer to things that are little, I am pleading with you to stop. If you find yourself around someone who uses this word, tell them to do the same. Remind them this is hurtful, degrading language and is not acceptable. This is not about political correctness, only simple human decency. I have no doubt that Mira will hear this word in her lifetime. My biggest fear is not that it could happen; it is that when it does, I have not fully prepared her. As her mother, that is my responsibility, as is my job to educate others. I want you to think about Mira. Think about the journey we have been on and the challenges she will face in her lifetime. Think about how hearing that word would make her feel. Time to end the word.
Ellie has grown to be well aware of Mira's diagnosis. We don't really know to what extent, but we certainly don't shy away from the subject. Evan and I decided early on that we would never lie, sugarcoat or speak to Ellie as if she wouldn't understand. She understands everything. She is bright, inquisitive and very protective of her little sister. We have several kid friendly books about Dwarfism that Ellie asks us to read to her as she loves learning about what makes Mira different. It's been a wonderful opportunity to instill in her that people come in all colors, shapes and sizes. Above all, Ellie sees Mira as her adorable baby sister and nothing else. She calls her "bubba", loves feeding her, kissing her, playing blocks with her and makes her laugh like no one else can. I truly believe Ellie was born to be a big sister to a very special girl. She is loving, compassionate, kind and I have NO doubt she will be Mira's biggest advocate, protector and best friend.
Obesity is something that both children and adults with Dwarfism have to be careful of. Many experience obesity as their height plateaus. A person with Dwarfism has a regular-sized torso and shorter limbs, but the same size stomach as an average-sized person, which means the same size appetite with not a lot of space for the weight to go. So far, Mira has been on target with her growth & weight hasn't been an issue. She's an incredible eater (maybe a little too incredible) and will eat anything you put in front of her, so we will continue to be diligent about watching her growth curve and giving her the healthiest options possible. With that said, every so often, a girl's gotta have her pizza.
Achondroplasia is caused by a mutation in the gene that affects the formation and growth of the long bones, but all bones are affected. Muscles, skin, hair, internal organs are all the same size as they would have been in a body that did not have the gene mutation. That is why babies with Achondroplasia have those delicious rolls in their arms and legs. They are not necessarily fat rolls, but skin and muscles that have nowhere to go to be stretched out. I love on those rolls every day.
Two months before she was born, Mira was diagnosed with a lethal form of Skeletal Dysplasia called Rhizomelic Chondrodysplasia Punctata, or RCDP. Her life expectancy was heart-wrenchingly unclear; minutes, hours, maybe weeks? Several weeks later, we were blessed with our miracle when the original diagnosis would prove wrong and she was determined to have Achondroplasia, the most common and non-life threatening form of dwarfism. "Skeletal Dysplasia" is the medical term for what many people refer to as dwarfism. It’s an umbrella term that includes over 300 different types that affect bone and cartilage growth. Achondroplasia accounts for about 70% of cases worldwide. Mira has dwarfism, but dwarfism won’t be what defines her. I know that while she will be small, she will impact the world around her in big ways. She already has.
Many pediatricians lack the experience to properly care for children with skeletal dysplasias. Only about a half-dozen clinics in the country treat children with dwarfism. More than 250 children from around the world (including some of the well known ones on television) go to Nemours/Alfred I. duPont Hospital for Children in Wilmington Delaware, one of the best facilities in the world for skeletal dysplasia diagnosis and treatment. We feel very fortunate to have Mira in the care of this incredible team of doctors and nurses. We also feel fortunate that we live about 90 miles from the hospital. Most people travel much, much further. We work with coordinators to consolidate multiple appointments into the same day, so we don't have to spend TOO much time on the Turnpike!
Full disclosure: I can't focus on anything during this Yankees game, let alone string together a rational thought about dwarfism awareness. So, I will just say thank you for following along this month, for your comments and messages and for your unwavering support. Also, if you have any questions about Mira or Achondroplasia that I haven't addressed yet, comment below or dm me and I am happy to answer. Also, Mira likes pumpkins. 🎃Let's Go Yankees!
To sugarcoat our story would be unfair. When we received Mira's diagnosis, I was terrified, angry and riddled with guilt. I had no idea what to expect and no one to confide in. I was grateful for my friends and family and of course, Evan who offered up endless love and support, but at the end of the day, I was the one carrying this baby and what felt like the weight of the world. For the first time in my life, I felt alone. I remember telling my mom "I can't do this." I have to be honest about the these parts because I know there are people reading this, people who see pictures of a happy baby and what I hope are positive, inspiring messages. Like many stories, especially ones on social media, there is another side. A side filled with fear and sadness and unanswered questions. It's a side that is vulnerable and raw, but very real. Glossing over these parts paints an inaccurate picture of our journey and I want others to know they are definitely not alone. Over the past year I've learned I can do this. I am doing this. I was blessed with someone very special to show me the way. We call her MJ.
Over the weekend, I had an unexpected conversation with a 7 year old on the sideline of Ellie's soccer game. This little girl was fascinated by Mira, drawn in by her "cuteness" and slightly confused by her age. "Why is she so small?" she asked. Even though she wasn't my child, I decided this was one of those teachable moments that I couldn't pass up. I explained to her that Mira was born with dwarfism which meant her bones are small, don't grow as fast and she wouldn't be as tall as other children. "Oh, ok", she replied. "Do you think she will play soccer when she's older?" "Absolutely." It’s so important to teach our children to accept and embrace what makes everyone different. I think there is this idea that you shouldn’t point out the differences and talk them through with your kids because then you are drawing attention to it. Well, guess what? Kids notice. Kids are curious. Pulling them away and avoiding the subject altogether creates a divide between them and others who may not be exactly like them. We are happy to discuss what makes Mira different. We want children (and adults) to know that there is so much more to Mira than her size. If you know someone or see someone with special needs, talk to your child about what makes them different, but also talk to them about what makes them very much alike.
Ear infections are extremely common among children with Achondroplasia because fluid doesn’t drain out as well due to their anatomy. Our local pediatrician knows to always check Mira's ears really well for fluid, and that if she does get an ear infection we need to have her checked a week or two afterwards as well to make sure the fluid is gone. Ear tubes are very common for these kids (upwards of 80% end up needing them) sometimes multiple times. Today we visited Mira's ENT (Ear, Nose & Throat) doc in South Jersey. He will check in with her twice a year to monitor her ears as well as her tonsils and adenoids to make sure they aren't contributing to her obstructive sleep apnea. He reported that everything looks great and there is no need for any surgery at this time!
By now, you should know that October is Dwarfism Awareness Month, but did you know that October 25th is World Dwarfism Awareness Day? Today, people with dwarfism and organizations around the world that support little people and their families unite to promote awareness and show pride. We show support by wearing green, the official color that represents Dwarfism Awareness. Thank you for following along, reaching out and helping to educate others about Achondroplasia and our fierce little lady.
When you have a baby with dwarfism, you are given a long list of "No's": No mechanical baby swings, No umbrella strollers, No jumping toys/bouncers, No baby carrying slings, No Bumbo seats, or similar designs that encourage propped up sitting, No soft backed chairs, No car seats with steep inclines.
This list was provided to us by Mira's doctor in order to limit uncontrolled and sudden head movement that could result in serious injury. There are 3 major parts of her body that we need to keep a very close eye on: her head, her neck and her spine. Hard backed items are mostly ok, we just have to make sure that there is plenty of back support. We owned and used most of the above mentioned baby gear with Ellie and were surprised to learn that these items don't offer adequate support and control for a baby with Achondroplasia. Needless to say, our expecting friends and local charities were very happy that we were ready to part with our baby gear!
I couldn't make it through this month without mentioning our first baby, our furry little love, Cooper. We welcomed Cooper into our family the same day I found out I was pregnant with Ellie. I love that he is growing up right alongside our girls. When I was pregnant with Mira, Cooper didn't leave my side. He knew I was pregnant, but he also knew something else was going on. When we brought Mira home from the hospital, I figured his reaction would be "oh great, another one", but that couldn't be farther from the truth. Cooper knows that Mira needs extra attention, and he is always there to give it to her. He has seen her struggle and triumph and he always has her back. Literally. Now that Mira is working on sitting up, but is still a little unsteady, Cooper positions himself right behind her offering her extra support. It is one of the most incredible things I have ever seen.
I stopped believing in coincidences sometime after Mira arrived. I now know there is no such thing. It's not chance or luck, it's the universe's way of placing you exactly where and with whom you need to be with. I met Hillary in college. We weren't very close at the time, she was 3 years younger and in a different field of study, but we were in the same sorority, so she was involved in a big part of my college experience. After graduation, we lost touch, so you can imagine my surprise when I learned she had moved from South Jersey to my town, living only a mile away from us. She is also a social worker at the local hospital where I delivered Ellie. Hillary is smart, kind, beautiful and extremely athletic. She was also born with dwarfism, and was the only little person I have ever known in my life up until Mira came along. She was one of the first people I reached out to when we received Mira's diagnosis and has been a wonderful source of support ever since. It was no coincidence that Hillary came back into my life. It makes me happy that I have a friend/sister so close by and even happier to know that Mira has such an incredible woman to look up to.
Little People of America is a national nonprofit organization that provides support and information to people of short stature and their families. LPA has more than 6,000 members across the United States. LPA offers information on employment, education, disability rights, medical issues, clothing, adaptive products and the many stages of parenting a short-statured child - from birth to adulthood. This weekend we attended our first LPA regional event. It was a whirlwind of meals, meetings, introductions and just plain old hanging out. We met some pretty incredible people, all with different stories, some even like ours. While Mira's social skills are currently limited to drooling on others and her two-tooth smile, I know LPA will be an invaluable resource for her during her lifetime. She has already met a few babies her own age and I can't wait to watch them grow up together. I also think its important for Ellie to be exposed to other children and adults with dwarfism. She ran around all weekend with a mix of kids and she didn't think twice about anyones size. It was an exhaustingly wonderful weekend and I look forward to many more LPA events like this one in the future.
With just 1 post to go, I wanted to thank you for following along for Dwarfism Awareness Month. I truly hope you have learned a few things about Mira and you now have a better understanding of Achondroplasia. You have shown our family endless support and we know that with this army of people cheering her on, this girl is going to move mountains. Although October is coming to an end, we hope that our message continues to be heard. Like all parents, we want nothing more than for our daughter to feel included, accepted and treated as an equal. It really does take a village, thank you for being a part of ours.
This October I committed to thirty-one days of awareness. Thirty-one days of advocacy. Thirty-one days of writing about our sweet Mira Joy. With just a few more hours left in October, I'd like to end the month with this thought; Mira is our superhero. She possess strength, courage and grace. She is the sweetest girl with the soul of a warrior. She has already endured so much in her first 15 months, and I know she will push through every battle she faces. Mira Joy, you have truly earned your nickname of "Mighty Mira" and we will continue to be in awe of your extraordinary spirit and your undeniable superpowers.