Cleft Lip and Palate Awareness Week

 

The morning of June 13^th was the same as every other morning except we were excited to see our little baby on the big screen that day. It was time for her anatomy scan, where they look her from head to toe and tell us she is perfect and we, the proud, beaming parents, post the grainy black and white picture that most can’t translate into a baby.  After all, we had made it past the dreaded first trimester with a healthy and active baby and had no reason to believe this day would be anything but fun!

Wrong.

I hopped up on the table, got all settled in and let my belly hang out as the tech plopped the warm goo on it. The baby looked great but …I noticed immediately her profile looked different than her big sister’s. I couldn’t figure out what was right below her nose. Despite that, I was not all that worried. This was my second pregnancy, and I was pretty good at reading sonograms. I assumed it was something else just in the way, something that was no big deal. Towards the end, I asked the technician what was under the baby’s nose.

Her response was, “I don’t know”.

Umm … what??

The correct response, or at least the one I was expecting, was that it was a non-issue, like the umbilical cord or something else just floating around, right?

Cue the panic. I started throwing questions at her faster than she can answer. The calm, cool, and collected mom disappeared and was quickly replaced by a much less calm, cool and collected Mama Bear. I need to know what was going on with our baby RIGHT NOW. “You will see the doctor in a few minutes and she should be able to answer these questions.” The OB was also not sure what was wrong with our baby, but was pretty confident it was not a cleft. And yet, she wanted a second opinion.

A few days later we were sent for a level 2 sonogram with a Maternal Fetal Medicine Specialist. There was entirely too much time in between appointments, and I sat and conjured up all sorts of horrible and scary things that could be wrong with our sweet baby. This was the baby that we waited for and never imagined would come as quickly as she did; the one we were head over heels in love with – our second rainbow baby. This is not the way things are supposed to go. And this was not fair. I was sick with worry and questions but had no answers. What if this baby, the one we begged God for, wasn’t going to be able to stay? What if people were mean and didn’t accept her differences? And the big one, what if I was not strong enough to handle all that may be yet to come? I had no doubt in my mind that this little girl was a warrior but I worried that I was not the warrior momma she needed.

The specialist was able to confirm almost immediately our little girl had “a cleft lip with possible palate involvement” (cleft palates are almost impossible to diagnose in utero). At first, we were relieved. That was the least scary of the options since it is just a cosmetic fix, right?

Nope. Wrong again.

While it is definitely a “doable diagnosis” and in our case not life threatening, it is not a simple fix. It does not stop with cosmetic surgery on a lip. It means a lot of major surgeries on a very little person, and all the other health risks that can be associated with a cleft. If it is an isolated cleft they can have a range of issues from speech, hearing, and feeding issues. If the cleft is caused from a syndrome, there is an entirely new range of possible health issues. Also, there is a strong possibility children with clefts can pass it on to their children. Our Marcie has a 50% chance of having her own cleft cutie.

You might be wondering where my husband is in all this. He was/is my rock. I cried many tears over dinner those first few weeks, and he just kept loving me and assuring me that everything would be okay – that this was a non-issue, no big deal, something we could definitely handle. SPOILER ALERT: He was right. This WAS doable, we could DEFINITELY handle this and everything IS just fine.

Over the next few weeks, we researched until I am pretty sure we had read everything published on clefts. Google images were terrifying but we couldn’t stop looking at them because we needed to know what to expect.

We met with Dr. Richard Reddett and Clinic Coordinator, Kim Seifert at Johns Hopkins Hospital and we knew instantly we had found our people. We left that appointment with more peace in our hearts than I ever thought possible. We felt like we were part of an unstoppable team, and we were not wrong. They calmed all our fears and worries and assured us they would be with us every step of the way.

Besides the cleft, the remainder of my pregnancy and delivery were normal and uneventful. Our beautiful Marcie arrived late one October night with a bilateral cleft lip and palate, and she was perfection. Our hearts soared and we were instantly in love. All of our worries faded the moment we met her. Mom, Dad and Big Sister Mollie were over the moon with our brand new addition.

While her first six months of life have not been uneventful, things could have been much worse. We discovered at her two-week check-up that she had not gained one ounce since delivery. We were immediately admitted to the hospital for testing and observation. The doctors did numerous tests and thankfully, found she was perfectly normal and the solution was nothing major.

Over the next few weeks we monitored her closely, we played with the calorie count and nipple size in her bottle (Dr. Brown’s Specialty Feeding System) and slowly but surely our efforts started paying off. She started regaining her adorable chubby baby look and we all did a happy dance.

I do not say this lightly – our pediatrician and cleft team have been our saving grace during our less than graceful times. I was in constant contact with them who, God bless them, always answered me no matter what. They calmed my nerves when I felt like the world was falling down around us and stuck with us, cheering us on.

Surgery time line and details differ from every cleft team/surgeon but this general timeline is pretty common. Our team does lip repair in two stages vs. using a pre-surgical device .

Marcie underwent her first surgery, stage 1 lip repair, aka lip adhesion at 3 months old. The purpose of this surgery is to prepare and stretch the soft tissue of the lip for the final lip repair a few months later.

The second surgery is the final stage lip repair where they undo the work they did during the lip adhesion, remove any extra tissue and close it up. At 6 months old, Marcie has completed her lip repair with simply amazing results.

Next is palate repair, a pretty intense surgery where they move muscle and tissue around her mouth. This will take place in a few months for us. Then she will have some cosmetic work on her bottom lip a few months after that. Since her gum line is affected, she will most likely require bone grafts before the age of 10. As far as we know, this is the bulk of her surgeries but honestly, I haven’t asked beyond that so don’t quote me.

Truth be told, every blog I read prior to giving birth said I would miss her cleft smile once it was gone. I wondered how true that was. Now I can assure you, it is 100% true. I miss her cleft smile everyday but I am also so happy for her and her forever smile. Only a few select people get to have three perfectly amazing smiles in their first 6 months. She has recovered beautifully and as of this week is finally sleeping through the night again (FYI – anesthesia wreaks havoc on a baby’s sleep patterns).

If you just learned about your baby’s cleft and are freaking out, take a deep breath. Take it from me and the rest of us Cleft Mommies, it’s not always easy but it is going to be okay and you will definitely adore your sweet baby. You will be their biggest advocate, and you are so much stronger than you feel right now.

My two pieces of advice for new cleft parents:

1. Choose your pediatrician and cleft team wisely. You will not only need their skilled hands but their full support and calm spirits.
2. Get off Google Images and join some support groups with real life parents.

“I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well.” Psalm 139:14

If you want to learn more about clefts here are some of my favorite sites.

Some of my favorite non-profits that help those affected by clefts around the world: