Wonder. Perhaps you or your children have read the book. Maybe you’ve seen the film adaptation now that it’s out in theaters, or maybe you’ve only seen the trailers on TV. In my personal opinion, they are all absolutely phenomenal and do an amazing job of spreading the “choose kind” message. I also greatly appreciate how they are raising awareness of craniofacial differences and encouraging people to look beyond appearances. However, they make it seem like having a craniofacial difference means you’re on your own to figure out how to navigate it. Thankfully, that couldn’t be further from what my family has experienced.
Six years ago, my husband and I found out that we were expecting our first child. We were over the moon and in love with our baby from the moment we saw those two lines. Everything in my pregnancy was going well, and our 20-week anatomy scan revealed a healthy baby girl and mommy. I was 26 years old and was making very conscientious choices in caring for my body and the life growing inside it, so of course I expected a good report. That should have been my last ultrasound, but the ultrasound technician forgot to take a certain measurement of my cervix during the scan. So, my OB scheduled me for another ultrasound a few weeks later, whispering that is was a good excuse to see my baby again before she was born.
This ultrasound changed everything. I knew something was wrong when the technician kept measuring my baby’s head over and over and over again, finally leaving to get her boss to double check the measurements. After much silence, they explained that my baby appeared to have an abnormal head shape and that I would be referred to a maternal fetal medicine (MFM) specialist to closely monitor her. Very long story short: over the next month or so, my MFM came to the diagnosis of Pfeiffer Syndrome, a craniofacial condition characterized by sutures of the skull fusing prematurely (read: my baby wouldn’t have the soft spots necessary to allow for proper brain growth), a high forehead, recessed mid-face with a beaked nose, broad thumbs and toes, and possible hearing loss or deafness. At that point, though, the severity of these and other potential abnormalities was unknown. Would she be able to breathe on her own, eat on her own, hear me tell her that I love her? We wouldn’t know until she was born.
As you can imagine, I was a mess after receiving this diagnosis for my baby. I was scared, confused, angry, and often inconsolable. I knew I had a wonderful support system of family and friends, but no one—even our baby’s future pediatrician—had any knowledge about this condition. Everything the MFM gave us seemed to be from a medical textbook; it was very blunt and technical and gave us no comfort in what we were facing.
Against my better judgement, I fell down the Google rabbit hole. I found pictures of very severe, untreated cases of craniofacial conditions like my daughter’s and learned that Prince had a son with Pfeiffer syndrome who passed away soon after birth. It all made me feel like I was facing something I wouldn’t be able to handle with the grace and love that every child deserves from her mother.
And then I discovered Children’s Craniofacial Association. The day I called them was a turning point in my pregnancy. I recently read that someone referred to CCA as a “portal of hope,” and this couldn’t be more accurate. I spoke with CCA’s Program Director, Annie, that day for I don’t know how long. She listened to me cry, and for the first time, I heard responses and reassurances from someone who truly “got it.” She knew all about craniofacial conditions, knew people with my daughter’s condition, and knew how to assure me that I was not alone in this and that my daughter could thrive like the incredible kids she knows. I still can’t think about this conversation without crying tears of relief and gratitude.
Annie sent me a package that contained a brochure about Pfeiffer syndrome that was informational without being detached from the realities for the family or overwhelming. She also included copies of their quarterly newsletter, making sure to include one that highlighted an amazing young woman with Pfeiffer syndrome who was, at that time, pursing her degree in education. There was also a build-a-bear animal and a blanket, gifts for our baby who we recently decided to name Abby. All of this didn’t make my fears go away, but everything finally felt manageable, and I knew I had a network of other families who had already travelled the journey that we were just beginning.
Armed with this support and not feeling as alone, my husband and I decided to share the news of Abby’s diagnosis with more than just our closest family and friends. We shared the following post on facebook when I was nearing the full-term mark of my pregnancy:
After much thought and prayer, Tom and I have decided to share some news about our baby, Abby. She will be coming to us in a slightly different package than we had initially expected. For the past couple months, our doctors have been monitoring her for Pfeiffer Syndrome, a rare chromosomal defect that affects 1 in 100,000 babies. This syndrome causes abnormalities in face structure, hands, and feet, and it also causes craniosynostosis. This condition affects the sutures in her skull, causing them to fuse prematurely (in Abby’s case, the bi-coronal sutures, the ones by her temples, are involved). Because her brain will need room to grow and develop, she will need surgery as an infant to un-fuse these sutures (and depending on the severity of her syndrome, she may need other surgeries throughout infancy and childhood). This has been a lot for us to process, and I think the unknown (how severe her condition will be) has been the hardest. Fortunately, I can still try to have a natural delivery and knowing about all this in advance has allowed our doctors and us to do research and prepare for her needs.
We decided to share this news now for a few reasons. First, we want to increase awareness of this condition in the hope that it will foster acceptance of her differences (and all differences, for that matter). We also want to have a joyful announcement of her birth, complete with the many pictures that proud parents want to share (without having to give an explanation of why she appears different). Finally, we would like for you to keep us in your prayers. We would truly appreciate it as we welcome Abby into the world and work to give her the best care possible.
Sharing what we had been privately going through was such a relief. We were met with overwhelming love and support. I realized that this was exactly the kind of environment I wanted Abby to experience, one filled with understanding, acceptance, and joy for her arrival. I also realized how much Abby had changed me already before she was even here. She changed my perspective and helped me be grateful for so many things I took for granted.
I’m a little embarrassed to admit this, but when I first found out I was having a girl, I was worried she would get my nose. I was not a fan of my nose, and I surely didn’t want to pass it on to my daughter. Once I learned that she may not be able to breathe on her own because of severely narrowed airways, I saw my own nose in a completely different light. I could breathe and smell with my nose, and my goodness, I would love if she had a working nose like mine! It may seem silly, but this is just a little example of the bigger shift that was happening in my perspective. Even with knowing she would have differences, of course I still wanted to her thrive, but all of this really made me consider what “thriving” meant. I realized that, when it came down to it, I wanted her to be happy, to know she was loved, and to know God. Instead of focusing on how I wanted her to be able to play the piano, I prayed that she would be able to hear music and feel it touch her soul. I hoped she would be able to do well in school, but I wanted much more for her to be kind to all her peers, regardless of their differences, and I prayed that she would get that same kindness in return. Having the perspective of her diagnosis helped me see that there was a big difference between what I thought I wanted for my daughter and what I truly felt contributes to a fulfilling life. I’m incredibly grateful that I was able to have this time to think about life priorities before Abby was born.
Abby chose July 31, 2012, to make her grand entrance. Her birth was a bit stressful, but we were so happy to finally get to meet our sweet baby. Because of the blessing of knowing about her condition in advance, we could focus on being thankful for the many things she could do (Breathe on her own! Nurse! Hear!) rather than be surprised about her differences (craniosynostosis/abnormal head shape and deformities in her hands and feet). From day one, Abby has shown us a strength and resilience that has been nothing short of inspirational.
Appointments with Abby were hard for me at first. Every time we saw a new doctor, specialist, or therapist, they would run down the list of everything “wrong” with her (including ears that were “too low” and shoulders that were “too narrow”). I know no one is perfect, but it got really old really fast to hear the litany of things wrong with my newborn. Thankfully, we’re set with our team, and this stopped before Abby had to hear the list that picked her apart.
Like Auggie in Wonder, we’ve had our share of stares and rude questions and comments. One day at the pool, a little girl screamed and ran away when she saw Abby’s feet because her toes are different. Another time, a child came up to Abby at the playground and asked, “Why does your face look like that?!?” Sometimes Abby’s hair falls in a way where the scar across her scalp is very noticeable, and sometimes when she runs, her shorts bunch up and you can see the long scars coming down from her hips. When kids ask Abby about her scars, she’s happy to tell them about her surgeries. We’re still struggling with the best way to respond to the more rude reactions to her differences, though.
Abby is now a fun-loving, active, intelligent five-year-old young lady who loves playing with her two little sisters and is thrilled to go to kindergarten each morning. She has endured 11 surgeries (to be honest, I don’t technically know how many surgeries she’s had because her care team is wonderful with coordinating procedures so multiple surgeries take place each time she’s put under; I just say 11 because she’s been put under 11 times), and they have helped decrease her intracranial pressure, have allowed her to breathe better, have corrected her hip dysplasia, and much more. She has more surgeries ahead of her, but we’ve been enjoying a little break for now. In fact, we were very excited to recently celebrate going a whole year without a surgery! I still think Abby sees the hospital as a second home, though, and she currently says she wants to be a doctor. Considering the last time she was in the OR, I think she might be well on her way…
I generally go back with Abby when she has surgeries for PPI, parent present at induction. We have a routine where I sing a certain song to her while she gets the gas mask and falls asleep. While the doctors and nurses were preparing for her induction, the anesthesiologist said, “Okay, Abby. I’m going to put this sticker on your thumb now. No ouchies at all, it’s just a sticker.” Abby gave him a sideways look and replied, “Uh, that’s a pulse-ox.” The whole room erupted in laughter, and her anesthesiologist apologized to her for not using the technical term. That’s my girl.
As with that OR story, in the midst of the most challenging times, Abby will make people smile. We’ve had people reach out to us to share that they thought of Abby when they were recovering from surgery, trying their best in physical therapy, and pushing themselves to finish an Iron Man. As inspiring as we all think Abby is, I know that all cranio kids are amazing. This brings me back to Children’s Craniofacial Association. Thanks to CCA, I’ve had the opportunity to meet them, and Abby now has CCA friends and role models, something I wish Auggie and his family had in Wonder.
CCA does incredible work with raising awareness, educating others, and providing financial assistance to help families cover the costs of travel and lodging to get their children the care they need. One annual event shines even brighter than these good works, though. Every year, CCA holds a retreat for individuals and families affected by craniofacial differences. It is held in different cities across the country, and it gives families the opportunity to connect with one another, learn in educational symposium sessions, and have fun on outings and during dinners and dances, all in an atmosphere that is full of love and acceptance and free of the stares that many work so hard to pretend to not notice on a daily basis. Even though families have often previously connected on social media, they get to connect on a much more personal level at the retreat, and once-strangers quickly become extended family.
I know Auggie and his family are fictional characters, but I ached to connect them with CCA. My stomach then dropped with the realization that there may be real families out there who are trying to navigate the stresses of a craniofacial condition and don’t know CCA exists. This is a big reason that I volunteer for CCA. I want to support this incredibly worthy organization that works every day to empower and give hope to individuals and families affected by craniofacial differences. To learn more about these conditions and CCA’s work, please visit ccakids.org. There are many ways you can support CCA’s mission (making a direct donation, holding a fundraiser, organizing a youth group/school service project, and much more). I am also happy to speak with schools and other organizations about our experiences and to help bring Wonder to life. Please contact me at teamabbyfundraiser@gmail.com if you have any questions or would like to be involved.
