Stories: Living with Cleft Lip and Palate

Cade’s Story – Written by his mom, Michele

Michele and her son Cade, who was born with cleft lip and cleft palate, share Cade’s story. Cade has learned to define his disability, not let it define him, and to use it to help others by telling his story.

My son Cade was born April of 2000 with a severe case of cleft lip and palate. I didn’t learn about Cade’s cleft during my pregnancy, and after his birth, I had a lot to absorb and learn very quickly. Even though at first we were devastated and scared, my husband and I immediately embraced the challenges we knew we faced, and we were just as proud of our new son as if he had been born without a birth defect. We knew that God had given Cade to us for a reason, and we spent the first few months of Cade’s life educating ourselves about his condition and things we could do to make Cade’s life as normal as possible. Although there were things we had to do differently, we tried very hard to treat Cade as though there was nothing different about him. Before his first corrective surgery, we proudly showed him off, took pictures of him, and sent him to daycare as though there was nothing different about him. We focused on educating everyone we came in contact with, rather than sheltering him at home.

When Cade began school, sometimes the other children would tease him. As much as it broke my heart when he was bullied, we explained that everyone gets made fun of and that we all have insecurities. We asked our family and close friends to share their own experiences and insecurities, and encouraged Cade to address his differences. When he was the star of the week in school, he would take in pictures from infancy and educate his classmates and teachers about his condition. Before each surgery, I would join him at school to talk about the surgery in front of his class. As a result, the other children became supportive and protective of Cade, rather than teasing him, once they knew more about what he was going through.

Today, Cade has had five reconstructive surgeries, five sets of ear tubes, and has many more surgeries to come. I admire Cade for his determination, confidence, and his caring and outgoing personality. He has learned to define his disability, not let it define him, and to use it to help others by telling his story.

From Cade:

God has made me this way for a reason, and I feel his reason was for me to help show other kids and adults that it’s ok to have a disability. It shouldn’t hold you back. It has never stopped me from doing anything. Sure there are things I don’t like about myself, but overall I am happy with the way I look. My goals are to continue to make people feel better about themselves and strive to become a professional baseball player. If I had message it would be to say “look at me, not my disability!” God made you this way for a reason too, you have a gift not a disability so hold your head high and go for your dreams.

Daniel and Jacob’s Story—Written by their mom, Kristin

Kristin’s sons are three years apart, both born with a cleft lip and cleft palate.  Kristin shares her family’s difficulties that they experienced, but also shares how both boys are resilient, strong, and healthy.  Read their story below.

I have a vivid memory of hearing the doctor say to me, “Your son will have a cleft lip and palate.” Time stopped temporarily, and I felt suspended on the exam table. Cleft lip and palate? Me? My baby? As we anxiously awaited the birth of this special son, I played over the scenarios in my mind. Would he eat like other babies, would he look too very different? The wait was agony. When the baby came he looked up at me with his steel blue eyes and cherubic cheeks. Then, he nuzzled me softly, and I knew we would be alright. I would buoy him up and help him thrive, and he would do the same for me.

Three years later, it was like a bad movie stuck in replay, “Your son will be born with a cleft lip and palate.” Wait a minute, I thought, I have already done this. I already paid my medical bills; we completed the surgeries. We have to do this again? Six months later my third son was born like his older brother, with a cleft lip and palate. This baby would suffer more with a more complicated condition. But it didn’t matter, I knew how to do it now, and any difficulties we experienced were swallowed up in our family’s love. Both children are resilient and active. My boys are strong and healthy. We have endured much and are grateful and stronger for it.

Jake’s Story—Written by his mom, Kate

Kate’s son, Jake, was born with a cleft lip.  In her family’s story, she shares her perspective of being a mother of a child with a cleft and the difficulties she encountered as well as the growth she experienced.  Read her inspirational story below.

When the ultrasound technician said, “Well, I see something that we need to discuss,” my husband squeezed my hand. This is what we’d been dreading. A congenital heart defect had shown up in the last several generations of his family, taking the lives of his uncle and brother. So when the technician said “it looks like your son has a cleft lip,” we actually laughed out loud. This was clearly not the reaction she was used to. Once the initial relief wore off, the reality began to sink in. Our son was different. His condition wasn’t life threatening, but his young life would be filled with surgery and pain, therapy and frustration, bullying and exclusion. I grieved. And then I prepared to care for him. I should have prepared to care for myself, too.

When Jake was born, the doctor held him up briefly, and then he and his twin sister were whisked away to the neonatal intensive care unit (NICU). Everyone told me once I saw him I’d instantly fall in love with that tiny wide smile. But that’s not the way it happened. Jake was a difficult newborn who would arch, scream and fight. I began to panic before every feeding. I don’t know if it was because I didn’t get to hold them for the first two days, or because I wasn’t breastfeeding, or because of a million other factors, but I wouldn’t bond with my son for another two months. Whatever the real reason I had trouble bonding with Jake, I felt it must be because he was different, and I was a horrible person for not being able to love him. He deserved so much better than me. For the first few months, I lived in a haze of guilt, shame and anger. I felt I had to hide these awful feelings and pretend like I was the strong, loving mother I was supposed to be. There was so much help available for my son. I didn’t even know to look for help for myself.

Now, I have a fantastic support network of online forums, a local cleft parents’ group, and several close friends I’ve met through this experience. But it took me a long time to find them all. I had to work through the confusion of emotions on my own. To ease my feelings of guilt, I wrote and illustrated a picture book about a young bear who wonders if his mama bear loved him before his lip was repaired, or if she loves him now. I also started a doll clinic where we make dolls with clefts and repair scars. I’ve found peace in helping other parents through the difficult first year of the cleft journey. There is a clear treatment path for children born with clefts. Their needs are obvious to see. But the needs of their parents can get pushed aside as unimportant, often by the parents themselves. As I’ve told many struggling parents “to care for your child, you need to care for yourself first.” That’s easy to say, but difficult to do. It feels selfish. Over the last two years, I’ve had to learn how.

Josh and Alissa’s Story—Written by their mom, Susan

Susan shares her family’s story of two of their children, Josh and Alissa. Josh and Alissa were adopted, both born with a cleft lip and cleft palate. Read their family’s story below.

Our experience with cleft lip and palate has expanded over the years through the experiences of two of our three Chinese-born, adopted children: Emily, Alissa, and Joshua. Alissa, was adopted at 18 months. She had a minor cleft palate that was easily repaired in the United States with the help of a cleft lip and palate team. She has experienced no issues since her repair. Joshua, on the other hand, was adopted at age two, and he has had multiple surgeries with the expectation of many more throughout his childhood. His first two surgeries to repair his lip and palate were completed in China. Since coming to the United States, Josh has had two more surgeries to repair his birth defect. He receives specialized care through a cleft lip and palate team. We travel over two hours each way to ensure that he has the best care possible. Because kids with clefts need a variety of special services, cleft teams help provide this specialized care in a coordinated manner. Even though we know there are multiple surgeries in his future, we are so pleased with the efforts of specialists and national associations in this country to provide exceptional care for children like Alissa and Josh so that they can have the best possible future.

Josh’s Story—Written by his mom, Krista

Josh was born with a cleft lip and cleft palate.  His mother, Krista, shares Josh’s inspirational story below.

As a family of three, we decided to adopt a child from China. During the adoption process, we agreed to adopt a child with special health care needs, and shortly thereafter, we were matched with Josh, a little boy with cleft lip and palate. His condition was surgically repaired while he was still in China, when he was about two years old. He was reexamined after we brought him home, and the doctors were impressed with his repair. He shouldn’t need another procedure until he’s between eight and 10 years old.

Josh is doing beautifully so far. At first, he needed some speech therapy to make sure he was on track, but he no longer needs these services because his skills are age appropriate. He also did wonderful at picking up his new English language. Josh is becoming quite the entertainer. He loves to make people laugh and tease his older brother. We are so lucky to have him.

Joshua’s Story—Written by his mom, Candy

Candy shares her family’s story of their son, Joshua, who was born with a cleft lip and cleft palate.  Joshua had many challenges in his first three years, but is now a happy boy who can drink from a straw, blow bubbles, kiss, and most of all – smile.  Read Joshua’s story below.

Joshua Aiden was born with a cleft lip and palate. Other than the fact that he looked a little different, he was just like any other healthy baby. He had his first surgery at only 3 months old. Surgeons repaired his lip and after the surgery, it looked so good. But, after only three days, the sutures starting coming out and his lip reopened. Joshua had over 14 heartbreaking surgeries over the next three years. His palate repair healed as planned, but not his lip.

Our miracle started at the mall, while taking Joshua’s birthday pictures. A professional baseball player named Mike Adams approached us about Joshua and asked why his lip had not been repaired. When we explained our situation, he asked if he could help us. Because of this, Joshua received a special surgery using a technique that had not been used on Joshua before, and this time the lip did not come apart. This has completely changed Joshua’s life and ours. As parents and grandparents, it was hard to watch Joshua undergo so many surgeries and procedures. We only wanted Joshua to be healed and start living his life without being stared or laughed at. The first time Joshua was able to drink from a straw or even blow bubbles came just a couple of months ago. And yes, I cried tears of joy, because he was so excited that he could drink from a straw. He said “Look NaNa, I can do it. I can really do it. I am drinking from my straw.” These are just a couple of things you would not consider important until you see all of your friends and classmates doing it and knowing that you can’t. Today Joshua can drink from a straw, blow bubbles, kiss and most of all – smile. Joshua will have a few more surgeries in his future, but this was the one that has changed him forever.

Babies are born with clefts every day, here and around the world. I know how hard it is to see your child be treated differently just because of the way they look. I do not let a day pass that I don’t share our story. It is my prayer that each and every baby born around the world with any form of cleft will have a chance to smile just like Joshua has.

Pablo’s Story—Written by his mom, Belen

Pablo was born with a cleft lip and cleft palate.  He is a brave and strong little boy who is growing into a wonderful role model for other kids with this condition.  His mom, Belen, shares Pablo’s story below.

Pablo is a bundle of energy. He can spend hours with his Legos, and he is a proud Cub Scout. He loves video games, bike riding, and taking care of his dog. In school, his favorite classes are P.E. and math. He has a really fun personality—at the start of the new school year he said he was only going to speak Spanish in class so that the teacher would not give him homework. As you can guess, that did not work. He can be mischievous, too. Once he brought home a book from the school’s library titled How to Drive your Sister Crazy. And even though he teases his big sister, he believes she knows everything and is always asking her to explain things to him.

As much as he is like any other boy, Pablo is also different. He was born with a cleft lip and palate. During my pregnancy, I had a hunch the baby in my belly was a boy and that he had a disability. Still, it was hard to hear that news. While still pregnant, I had to see many specialists and received so much information that overwhelmed and depressed me.

Many people believe that kids like Pablo only need plastic surgeries to be okay. Depending on the severity of the cleft, these kids see other specialists too. In Pablo’s case, we started with an occupational therapist and a speech therapist (who he still sees weekly). We also meet with a speech pathologist regularly as well as an ear, nose, and throat doctor, a dentist, an orthodontist, and a plastic surgeon. By the age of five, Pablo had multiple ear tube surgeries and dental procedures that required him to be put asleep. When he was younger, it was his constant earaches that worried me the most, but now it is the orthodontic work. He is brave and strong, but at his age, he does not accept all medical procedures and treatments well. And when he feels frustrated and in pain, he often blames me. But, he is also starting to understand that all of his wonderful doctors want the best for him. That part makes me happy. He is starting to ask doctors questions, and he is starting to ask about options. I know that one day he will be a wonderful role model for other kids with cleft lip and palate. And I love watching him grow and foreseeing the man he will become.