The little girl who could: Charlie’s cleft story

Infant with cleft lip wrapped in blanket, baby smiling with two parents holding her

Charlie was born with a craniofacial disorder called complete unilateral cleft lip and palate. Now 13 months old, Charlie has undergone several procedures and surgeries to correct her cleft. We sat down with her mom, Amanda, to learn more about their family’s cleft story.

Would you walk us through Charlie’s diagnosis and treatment?

When I was 20 weeks pregnant with Charlie, we discovered at an anatomy scan that she had cleft lip and palate. Obviously, the diagnosis was shocking. There’s no history of cleft lip and palate that we’re aware of on either side of our families. It was also scary because sometimes cleft is an isolated thing, and sometimes it’s a sign of other things.

You just don’t know what you don’t know, and ultrasounds only show so much. Our care team thought she had something called “complete unilateral cleft lip and palate,” and that turned out to be correct. But at every scan, Charlie’s hand was covering her face so we didn’t see her cleft until she was born. That’s when things started to get real.

We live in Eugene and went up at OHSU Doernbecher when Charlie was just 5 weeks old to start the process with our team there. She did the NAM (Nasoalveolar Molding – a nonsurgical method of reshaping the lip, gums and nostrils before undergoing surgery) with Dr. Judah Garfinkle and we spent the next six or seven months watching her cleft close – slowly but surely. Charlie then had her cleft lip repairs with Dr. Erik Wolfswinkel this past April. We have been thrilled with outcomes of both the NAM and lip surgery.

Smiling baby lying in hospital bed with motherLast month, Charlie had her palate repair. The process was definitely tougher than the lip repair, which we expected. It’s so hard to watch your kid go through something like this without them having the words to describe how they’re feeling, or the comprehension to know everything will be okay. Ultimately, the surgery was successful and Charlie’s care team is really pleased with the outcome, as are we.

Next up for Charlie will likely be a bone graft to reinforce her upper gum when she’s 8 or 9 years old. One of the first things that one of our providers said to us was, “By the time Charlie goes to college, it will be as if this never happened” and the bone graft surgery will get us one step closer to that reality. It’s comforting to know that one day this will all be behind us but as Charlie’s mom I can’t help but think, “That means I have 18 years of dealing with these emotions.”

Can you describe some of those emotions? What was it like learning about Charlie’s diagnosis and navigating everything your family has been through in the last year?

When your child is facing anything outside of that tiny box of what is considered “normal,” it’s nerve wracking. The diagnosis was enough to rock our world, and we then had to play the waiting game before Charlie was born. We tried to learn as much as we could prior to her birth. It was important to us to be able to plan ahead and understand what her course of treatment would look like.

Charlie’s older brother was born without any abnormalities, and I had to come to terms with the knowledge that that wasn’t going to be Charlie’s story. I mourned the fact that I wouldn’t be able to breastfeed her, though we were really fortunate that she took to the first bottle we gave her after birth. We had an amazing lactation nurse and Charlie didn’t struggle with eating at all.

Smiling baby sitting on exam chairIn a weird way, Doernbecher has become one of our favorite places to visit. It feels odd to say that remembering how we once dreaded our first visit, rearranged schedules and work to commit to our six-month stint of bi-weekly appointments and shed many fearful tears as we handed Charlie off for her first surgery. But we’ve come to establish some peace, comfort and joy when we visit “Charlie’s hospital.” This isn’t only due to the fact that with every visit we’re one step closer to erasing Charlie’s birth defect, but more so a testament to the unbelievable level of compassionate and professional care we receive when we’re there.

The wraparound services provided at Doernbecher are amazing. Our team understands how overwhelming this experience can be, while helping us realize that a lot of other people are going through similar things. Her team members are experts in their respective fields. They make us feel welcome, answered all of our questions (sometimes more than once!), follow up with us, take extra time to explain things and just love on our daughter. We truly love Charlie’s team and couldn’t be more thankful to have been matched with them.

What have you learned along the way that might be helpful for other families navigating similar diagnoses for their kids?

Smiling baby standing leaning on chairOne thing I wish I had known is how hard everything would be on us as parents. Charlie won’t remember her first two surgeries, but we will. It’s really hard to see your child in pain or struggling or doing anything that’s hard. I underestimated how much it would affect me. I don’t know that there’s anything I could have done ahead of time to help prevent or mitigate this, but it did come as a surprise to me.

From a practical standpoint, try to keep things in perspective and just take them one day at a time. That said, it’s equally important to allow yourself to feel the feels! It’s okay to feel sad, to feel angry. It’s normal to feel like maybe you could have done things differently to prevent this, even if that’s not true. All of your emotions are valid and you shouldn’t feel any shame about them.

We’ve also learned just how phenomenal the cleft community is! There are a ton of resources out there as well as individual families who are willing to share their stories and their tips and tricks. It helps you to feel less like you’re isolated or on an island. Social media turned out to be a great resource as it enabled us to find other families with similar stories, including a family in Ohio who has a daughter with unilateral cleft. They are such a wealth of information and a comfort to us – they get it, and that’s pretty special.

It’s been very rewarding to pay it forward in a way and give them what our Ohio friends gave to us by way of information and support. It’s really cool to see these relationships develop around what could be really negative experiences. Don’t underestimate the power of community!

Finally, don’t forget to do the fun things and celebrate the milestones. After the anatomy scan where we learned Charlie had cleft lip and palate, my doctor told me, “Don’t forget to do the fun things like having a baby shower and shopping for cute baby clothes. This feels overwhelming, but you’re still having a baby. That’s an amazing thing! Don’t forget that.”

My mantra – and it can be yours, too: We can do hard things. Charlie can do hard things. I can do hard things, and our family can do hard things.

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