When my husband and I welcomed our first child in 2019, we quickly noticed something different about the upper right side of her lip. After expressing our concern, we were referred to a craniofacial plastic surgeon who met with us and diagnosed our daughter with a microform cleft lip. 

The diagnosis was a surprise to us and was not detected during my pregnancy. While it is one of the more minor forms of cleft lip and/or palate, it was upsetting and frightening to learn that our daughter—only three days old at the time—would have to undergo surgery for a lip repair around six months of age. My husband and I had done our best to prepare ourselves for life as new parents; but we weren’t prepared for the possibility of having a child with a facial difference nor undergoing surgery at such a young age.

Adjusting to life with a newborn, especially the first-born, certainly has its ups and downs. It was much more of an emotional roller coaster than I anticipated. The unexpected cleft lip diagnosis also made the postpartum period quite challenging at times. I remember feeling anxious thinking about surgery, recovery and scarring. On some days these thoughts consumed most of my mental and emotional energy. If I wasn’t thinking about surgery, then I was reflecting on my pregnancy and questioning what I did or didn’t do that could have contributed to her cleft lip. After a lot of research and discussions with medical experts, we learned that her cleft lip was believed to be an isolated incident and likely due to a combination of genetic and environmental factors. Ultimately, this means we will never know exactly what caused her cleft lip. In the absence of answers, that has been difficult for me to process and accept. 

When my husband and I discussed the possibility of having a second child, our daughter’s cleft lip diagnosis realistically factored into our decision-making. We consulted with medical experts and learned that our risk for recurrence was about 5%, meaning there was a 95% chance it would not happen again. 

Fast-forward to 2021 when my husband and I were expecting our second child and preparing for my 20-week ultrasound. I was incredibly nervous because I knew there was a small possibility we were going to leave the appointment with news of a cleft lip and/or palate diagnosis. We learned that the fetus was developing and growing as expected; however, the sonographer detected what was believed to be a cleft lip and palate. 

In that moment, my heart felt like it broke into a million pieces, my stomach felt like it was on the floor and my world felt like it had crumbled. The sonographer left the room to get the doctor, who then confirmed a severe, unilateral cleft lip and palate. Instead of celebrating, we cried and felt completely hopeless. How could this be happening again? Why? I didn’t understand. 

After taking time to process the news and consult with multiple doctors, we continued with the pregnancy. One doctor we met with told us this was an “unfortunate case of lightning striking twice.” I was not prepared for the storm. It was very emotional and stressful, and not at all what I envisioned for my second pregnancy. This experience, which was supposed to be exciting and joyous, was filled with sadness, worry, fear, and grief. I grieved the loss of this second baby’s chance to be born without medical intervention, the loss of the opportunity to breastfeed, and the loss of having a baby without a facial difference. 

When our son was born and I held him for the first time I remember my first words to him were “I’m sorry.” I knew from my ultrasound appointments that his case was considered severe and when I met him, I knew his cleft lip and palate journey wouldn’t be easy. I felt so heartbroken for him. In those early days and months, I felt like I had failed him. I put a lot of pressure on myself to pump breastmilk for him, which was exhausting, isolating and uncomfortable. Ultimately, it was short-lived and we decided to switch to formula so we could find more ease in our daily family life. 

For the first five months of our son’s life, it felt like all I did was count down the days to his first surgery. I had been down this road before and knew what to expect, but it didn’t make things easier. Sending an infant into surgery is incredibly hard and the time spent in the waiting room feels like an eternity. When you finally get the call to inform you that your child is out of surgery and recovering, and the surgeon emerges to discuss the procedure, it feels like the weight of the world falls off your shoulders and you can breathe a sigh of relief. 

When I reflect on the postpartum period with our son, specifically between the 20-week ultrasound and his first birthday, it often seems like such a blur. I spent the first several months navigating life in an isolated fog. I felt numb to the world around me. The diagnosis, appointments, surgeries and anxiety left me feeling robbed of the postpartum experiences I had envisioned and hoped for—not just for me but our entire family.

Looking back on the experience of welcoming each of our children into the world and the challenges we faced at such a vulnerable time, what stands out the most were the unexpected feelings of sadness, despair, guilt, fear and anxiety; my mental health was impacted. I didn’t expect to feel angry when people referred to our son as “beautiful” or nervous to introduce him to the world. I was so protective of him that it took a long time to build the courage to share photos of him with friends and family. Something else I struggled with, and still do find challenging, are the feelings of jealousy that arise when seeing photos of other newborns or reading social media comments describing other newborns as “perfect.” 

Since becoming a mother under these circumstances I’ve experienced many traumatic moments and some of my lowest, darkest days. The perinatal periods with each of my children were difficult in their own ways, but there have also been so many bright moments and milestones. I’ve witnessed their resilience and the ease at which they learned to play and crawl while wearing arm splints after surgery. I’ve observed our son master blowing bubbles and drinking from a straw, which isn’t always an easy feat for children born with cleft palate. Additionally, I’ve learned a lot about myself as a woman, a mother and a partner, including my ability to work with my husband to face and overcome the obstacles that life has thrown our way.

There are many days I wish my perinatal experiences were different, but I can’t change what has happened. I know there will be more surgeries and tough days ahead. As difficult and unexpected as this has been, I will always be thankful for the support of family, friends, medical experts and mental health services. I’m fortunate to have connections with a small community of mothers who also have cleft-affected children and who understand this journey. In a world where not all medical conditions or issues can be treated, I’m extremely grateful that my children have access to health care professionals and treatments needed to repair cleft lip and/or palate and support their development.

Our children are now four and two years old; they are healthy and thriving. I’m proud to be their mother and grateful for how much they’ve helped me to grow and learn. For our son, his surgical journey isn’t quite over but we’re enjoying the break and trying not to think too far ahead. For anyone going through the same diagnosis, please know many have walked the same path and can relate to what you are going through. It may feel dark and stormy right now, but there are clear, sunny skies ahead. 

—Kendra