‘The doctor wants to speak with you.’ I always imagined what she’d look like. Now, I’m afraid to meet her.’: Mom of ‘cleft cutie’ says ‘I fell in love with her smile twice’

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“For years, I had imagined what my daughter would look like. She would probably have dark hair like mine, maybe olive skin, and a dimple like my mom. Once I met my husband, my imaginary daughter’s face became a bit clearer in my mind. She could have his long-pointed nose and freckled cheeks, maybe even green eyes like her grandfather. After giving birth to my beautiful son at the beginning of 2018, I knew if I were to ever have a daughter, she would be just as beautiful. Roughly a year after my son was born, I discovered I was pregnant again, this time with my daughter. As soon as we found out the baby was a girl, the speculations of how she would look and how fun and smart she would be began amongst our families.

I would get my first real glimpse of my daughter at my 19-week anatomy scan on July 12, 2019. When we arrived at the appointment, the sky was clear and sunny, and my husband and I were appropriately cheerful and excited. Once we were in the exam room, the sonographer turned off the lights and all that remained was the glow of the screen showing my daughter’s little body. The sonographer went through her checklist and showed us every part of her: her little brain, spine, arms, legs, and beating heart. When she tried to look at her face though, she paused for a while. I will never forget that pause. It was like the air had been sucked out of the room. For the first time since the sonogram began, I turned away from it and just looked at the sonographer’s face instead. There was some confusion there, some worry. And that worry quickly spread to me.

She quickly wrapped up and then showed us to a separate room and said, ‘Please wait here. The doctor wants to speak with you.’ The worry began spreading throughout my body. My heart was beating faster and while my husband talked nonchalantly, I barely heard a word. I had this sinking feeling in my gut I was about to be told bad news.

After sitting in that room, feeling every ounce of nerves in my gut for nearly half an hour, my doctor came in. Without even looking at me, she quickly blurted out, ‘Well, looks like your baby has a cleft lip.’ She proceeded to describe what this meant. She mentioned surgeries and doctors and then asked if I had any questions. I was speechless. My eyes were brimming with tears and I could hear my heart beating in my ears. My husband asked a few questions, but all I could think about was my daughter, who we had decided would be named Iris. I wanted Iris to be here immediately so I could hold her tightly. I wanted to protect her from the countless doctor appointments in our future. I wanted to protect her from the scary surgeries, and I wanted to protect her from the looks and judgments that would be inevitable in her future. All of these thoughts and worries overcame me in an instant and I felt like they were going to literally knock me over.

Finally, my doctor left the room. I got up, faced the window, and broke down in tears. They were heavy tears filled with disbelief and heartbreak. They were tears that wouldn’t cease for days. Once my husband and I left the doctor’s office, we stepped outside to dark, voluminous clouds. Just an hour before, the sky was blue and my vision of Iris was impeccable and hopeful, but as I walked to my car, heavy raindrops began falling. Every vision, I had of my daughter was gone and all that remained was sorrow and fear.

Courtesy of Amanda Leinenbach

Over the next few weeks, I researched everything I could about cleft lip and palates. I scrolled through pages and pages of little faces with wide, gummy smiles. I messaged mothers of babies with clefts on Instagram, I joined a cleft mom support group on Facebook and read countless personal blogs of cleft families. And while I gained an immense medical knowledge pertaining to clefts, the most valuable knowledge I acquired was from cleft moms who told me what I was feeling was completely normal. I was feeling grief. I grieved over the vision of my daughter I had created. I envisioned the greatest obstacle within her first year of life was learning to walk and speak. Instead, she would have to undergo two major surgeries. I envisioned my daughter being breastfed, but babies with cleft palates can’t nurse. I envisioned her first word being ‘dada,’ but cleft babies can’t pronounce nearly half of the alphabet until their palate is repaired. And most of all I grieved, and stressed over, meeting her. As difficult as it was to admit to myself, I was afraid to meet my daughter because I genuinely didn’t know how I would react to seeing her cleft. The moment I gave birth to my son, there was an instant and powerful love. I hoped and prayed I would see beyond her cleft and feel that same love.

Courtesy of Amanda Leinenbach

I continued researching and educating myself about clefts throughout my pregnancy. My husband and I found a great plastic surgeon who would eventually operate on our daughter. We met with specialists and were as prepared as we could be to bring our girl into the world. Finally, on December 4, 2019, our sweet Iris arrived. My labor was intense but quick, and within an instant, my daughter I had been dreaming about for years was here. Despite months of focusing on her mouth, the first thing I noticed was her eyes. The minute she was born her eyes were wide open and in an instant, they were set on mine. In that moment, all the worry, fear, and disappointment dissolved, and all that remained was the same powerful love I had hoped I would feel.

Courtesy of Amanda Leinenbach

Her palate was affected, just as the doctor had thought, but her cleft lip was much wider than they had predicted. Soon after Iris was born, the hospital wanted her tested for other issues. Often clefts are a symptom of other genetic abnormalities. They also wanted to make sure she could bottle-feed well so, within an hour of being born, she was whisked away to the NICU.

Courtesy of Amanda Leinenbach

The next time I saw my daughter she was in a plastic-covered bassinet with wires and monitors covering her. She had an IV in her tiny hand and a feeding tube running through her nose. Thankfully, all of her genetic tests appeared normal and her cleft was an isolated incident. Her feeding was our top priority, and over the next week and a half in the NICU, Iris learned how to use special bottles designed for cleft babies. While in the NICU, my husband and I also learned how to tape Iris’ cleft. Taping was a fairly new method of surgery preparation. We were to put an adhesive over her cleft to encourage her lip to come together over time. The smaller the gap became, the better surgery results would be in a few months.

Courtesy of Amanda Leinenbach

Our surgeon told us Iris would have her lip repaired when she was around three months old. When I was pregnant, I thought I would want her lip repaired as soon as possible but once Iris was born, I thought she was perfect. She began smiling so early! She had the sweetest, most giant smile I had ever seen on a newborn. All we had to do was lock eyes with her and she would flash the most wonderfully wide smile. The closer Iris got to her surgery date, the more I dreaded it. I had grown to love the very smile that made me so apprehensive while pregnant. I took as many photos of her beautiful smile as I could until March 11, the day of her lip repair surgery.

Courtesy of Amanda Leinenbach
Courtesy of Amanda Leinenbach

We arrived at the hospital at 6 a.m. Literally that week, Coronavirus became a serious threat and hospitals were beginning to take precautions. We had our temperatures taken and were questioned before being admitted. Once we were taken to the pre-op room, everything moved quickly. Iris had her weight, temperature, and blood pressure taken. I changed her into the most depressing, tiny hospital gown ever made, and then we were asked to bring her to the operating room.

I held Iris as we walked to the operating room. I will never forget her sweet little face looking at me because I kept thinking, ‘She has no idea what’s happening.’ Once we were outside the double doors, I slowly, reluctantly passed my daughter into the nurse’s arms and my tears refused to stay put. I held Iris’ face in my hands and kissed her cheeks while my tears poured all over her face. Eventually, I let her go and she and the nurse walked through the double doors.

Courtesy of Amanda Leinenbach

The surgery lasted three hours and the entire time, I was overcome with guilt. I kept blaming myself for Iris’ cleft. Somewhere in my pregnancy, I had created this birth defect and thus created her need for surgery and the inevitable pain afterward. I had created the shame she’d feel over the scar she would have for the rest of her life. Despite my husband, my family, and every doctor telling me Iris’ cleft was a random occurrence, the guilt was hard to overcome.

After the longest three hours of my life, Iris was out of surgery. I had always imagined seeing Iris’ cleft repaired for the first time. I imagined joy and relief but in reality, I was overcome with heartache. She looked like a different baby. I held her close and stared at her face for a long time trying to cope with a thousand different feelings. Sad, guilty, happy, angry, relieved. It was all there and the swirling mixture of them hurt.

Courtesy of Amanda Leinenbach
Courtesy of Amanda Leinenbach

Iris’ recovery consisted of Tylenol, saline nose sprays, and arm restraints her surgeon called ‘no-no’s.’ The next few days and weeks were rough. Iris would moan and cry in pain. She drank much less milk than normal, and she only slept when I or my husband held her. But she was tough and eventually, we began to see little glimpses of our smiley girl.

Courtesy of Amanda Leinenbach
Courtesy of Amanda Leinenbach

Iris is now seven months old and has had her lip repaired longer than she had her cleft lip. Her new smile is dazzling and just as instant as before. She is rolling everywhere and on the cusp of crawling! She giggles over everything her brother does and yells ‘mama’ all day long. Iris still has her cleft palate and will have that repaired near the end of 2020. I have a clearer expectation of surgeries now having gone through lip repair, but I expect it to be just as challenging and emotional. There’s no way to prepare for handing over your baby for surgery, there just isn’t. But until then, I’ll enjoy her bubbly personality and silly smiles. I’ll watch her grow and develop like any other baby, and I’ll know in a way I’m luckier than most moms to have had the chance to fall in love with my daughter’s smile twice.”

Courtesy of Amanda Leinenbach

This story was submitted to Love What Matters by Amanda Leinenbach from San Antonio, TX. You can follow their journey on Instagram and their blog. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories like this: 

‘There was something wrong with his face. ‘It’s not fair! I wasn’t supposed to have a baby like THIS.’ My husband kept telling me the doctor was wrong, but I knew otherwise.’ Mom a ‘blubbering mess’ after ultrasound reveals son’s cleft lip and palate

‘My ‘friend’ said, ‘Come on, of all people, you should understand why someone would want to abort a cleft baby.”

‘I can’t look like this anymore!’ I begged my parents for surgery. I’d arrive a new person and no one would have anything to say about my looks anymore. I was sure this was it.’: Woman overcomes bullying for cleft lip and palate

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