November 9, 2018

A day I will never forget - the day of my anatomy scan.

We were so excited to see our sweet baby; we made bets on how much he was going to weigh on the way there. We thought this was going to be just another routine appointment - ultrasound, talk with the doctor and be on our way - but boy were we wrong! We knew it was going to be a more extensive ultrasound, measuring his stomach, head and confirming that he was, in fact, a boy, but after 45 minutes, I wondered what was taking so long. The woman said to me, “Just a few more shots of his face and then you are all set!” I didn’t think anything of it. I thought he was just being stubborn, as always, during our ultrasounds. She finally got the pictures she needed and took us back into our patient room. Normally my midwife would be in the room within a couple of minutes, but it was taking longer than normal. She knocked, walked in and had this uneasy look on her face...I knew something was wrong.

She went over all the measurements with us and told us his weight. But then, I will never ever forget, “Your baby will need surgery; he has a cleft lip and palate.” She continued explaining what that meant, but I couldn’t tell you what she said. I blacked out, my body went numb. I look at my husband and lost it.

Have you ever felt your heart literally break? My heart broke into a million pieces. I fell into my husband’s arms, uncontrollably crying. I couldn’t catch my breath. I felt like it was my fault. I did this to our baby.

How could this happen? It took us an entire year of fertility treatments to get pregnant, and now this? Why us? What did I do wrong? Did I cause this? Did the fertility treatments cause this? Is he going to be okay? How will this affect his life? How will he eat? Will he need a feeding tube? Will he be bullied? Will others look at him differently? How can we put our baby through all these surgeries?

My midwife came back in and gave me a huge hug. She asked if we had ever met someone with a cleft lip before. We said no. She lifted her head to the ceiling and said, “Look at my nose and lip. I was born with a cleft lip, and you had no idea until just now.” We were speechless! There could not have been a better person in the world to break this news to us. I cried and cried and cried...for days, weeks, even months. I just couldn’t believe it. It felt like a dream. We were sad, angry, confused, scared, worried. We never ever expected anything to be wrong with our baby.

We were scheduled to get an ultrasound and to meet with the “cleft team” at a hospital 2 hours away. What’s a cleft team? We had no idea. A cleft team includes specialists from Audiology, Genetics, Oral and Maxillofacial Surgery, Orthodontics, Pediatrics, Dentistry, Plastic and Reconstruction Surgery and a Speech Pathologist. The doctor talked to us about “alternative options” – that wasn’t even a thought for us. We were keeping this baby no matter what…and nothing would change our mind. We would love him no matter what. It was less than 24 hours ago that we had just found out, and now we were meeting with a surgeon and talking about future surgeries. I was so overwhelmed. They went over all the complications and risks that come with cleft lip and palate. They explained to us that he wouldn’t have suction, which meant I couldn’t breastfeed like I planned. This broke my heart. They gave us two “Specialty Feeding” bottles, a packet full of information and the timeline of all his surgeries. They went over all the taping we would have to do to his face. We quickly learned that this was not just a “cosmetic fix” like everyone kept telling us. This was going to affect his life years and years down the road, until the age of around 20 years old. Maybe even longer.

March 25, 2019

The day our lives changed forever - Liam Mitchell was born.

Liam has a bilateral cleft lip and a complete cleft palate, meaning he has two “splits” in his lip that go through his jaw and gum all the way to the back of his palate. He has almost no palate at all.

He was the absolute most precious thing ever and we fell in love. He was just simply amazing. We had doctor after doctor come in every hour of the 5 days we were in the hospital. Examining him, showing students what a cleft was, making sure he was swallowing correctly, teaching us how to feed him, trying to see the severity of his cleft palate. Many babies with cleft have problems with their hearing, but luckily Liam passed his hearing test with flying colors. The day after he was born, our surgeon came to meet him and show us how to tape his face. The tape would help pull his lip together and better prepare it for surgery. Liam was not a happy camper and he hated the tape at first. What newborn wouldn’t be upset getting tape all over their tiny face? But let me tell you, he adjusted so quickly to this! I was so shocked but so so proud of him! One week later he received his NAM device. This worked like braces but instead of pulling teeth together, it was pulling his palate together. This unfortunately caused so much pain for our son. He would go 10-12 hours without eating because of the pain. He had to wear this and the tape 24/7. There were many tears between both Liam and I. I wanted to quit so bad, but we stuck it out, knowing it would help with surgery. Luckily we did, because Liam’s cleft went from 17 mm to 9 mm!

I absolutely fell in love with his cleft smile. I found myself wanting to show him off to everyone with no fear of what they would think. He was the cutest thing ever & I couldn’t imagine his little face any different.

June 28, 2019

The hardest day of our lives - The day we sent Liam into the OR for his first surgery.

We woke up bright and early at 4:30 AM, checked in, sat him in the pre-op bed, and the surgeon came in and went over the risks of surgery. My whole body went numb again, I couldn’t believe he was about to have surgery. His whole face was going to change. I loved his cleft so much, and I was so sad knowing that would be the last time I ever saw his cute little cleft smile. That’s what made him Liam. That’s all I ever knew. I felt like I was meeting my son all over again. They let me go back with him until he was asleep… my heart broke all over again watching him be put under anesthesia. I literally felt it break.

Five hours later, he came out of surgery and we fell in love all over again with his forever smile. He struggled so badly with eating. He had to relearn how to eat with his new lip on top of all the pain he was having. What was supposed to be one overnight hospital stay turned into a five night stay. My poor baby went 24 hours without eating. They could not get his pain under control. This was the hardest time of our entire lives. It was the absolute worst thing to see our son in that much pain. It is now weeks post-op and we are still struggling to get him to eat well.

Many think a cleft lip is an “easy fix.” It’s FAR from that. It’s at least 3-4 surgeries. It comes with risks, difficulty eating, difficulty breathing, hearing loss, jaw growth, other midline abnormalities. It affects the gum line and how the teeth grow in. Before Liam’s surgery he would get the most hurtful looks and comments. I’ll never forget the day I was told my son looked like a monster. Or when they would say “don’t worry it’ll look great after surgery” or “he will be so cute after surgery.” It was so hurtful, my baby was cute the way he was born... with his cleft. Some would speak without thinking or without realizing how hurtful it was. Many are afraid to ask questions but I would rather someone ask, rather than just stare at him. While I know he will never remember these days, I will be sure to tell him how amazingly strong he was. He is the strongest little boy I know, he has endured so much pain. He has gone through what many won’t go through in a lifetime.

I never knew you could love someone so much. He has taught me not to care what others think, not to be embarrassed. He has taught me how to be strong and keep pushing when you don’t think you can anymore. But most importantly he has made me the luckiest mama in the entire universe. I wish I could take back all the fears, tears and worries while I was pregnant. If there’s anything I can teach others about Liam and cleft awareness, it’s that it’s okay to ask questions! Let’s help educate the world and maybe then there will be less stares and more smiles. My baby is 1 in 700 and

I wouldn’t have it any other way

To learn more about Liam and follow the Fuller family’s journey, follow @thestorybehindtwosmiles on Instagram and visit www.thestorybehindtwosmiles.com!