‘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 palatte

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“After four years of on again, off again fertility treatments and medical issues, I found out that I was pregnant with my second child. It was the day after Mother’s Day in 2008. Two weeks prior, we had overheard my 5-year-old daughter wishing on a star for a brother or sister. We weren’t sure what did it. The thousands of dollars we had spent on fertility medications or the wishful dreams of a child. Either way, we were finally going to have the family we always dreamed of.

Courtesy of Jodi M.

This pregnancy was more complicated than my first. I was now over 35 years old and considered advanced maternal age. Compounding the issues were my own medical problems. I had suffered from sleep apnea for the last few years, was considered morbidly obese, and suffered from insulin resistance, hypothyroidism, depression, and anxiety. A few months into the pregnancy, I now had shingles down my spine, gestational diabetes, and severe morning sickness.

I thought nothing else could go wrong.

That September, we saw my baby boy on the ultrasound picture. Now we would have one boy and one girl, and we would be complete. We had already picked out the name Owen from our last pregnancy in case we hadn’t gotten a girl. It was a relief to have that completed off our checklist.

I started to need weekly ultrasounds to monitor his size due to the gestational diabetes. It was at the 32-week mark where I went in by myself thinking it was just a routine visit. As I sat there, the doctor walked back and forth between the machine and his file on the counter, writing down measurements. There was a long silence and I thought to myself that the baby must be big for his size. I have a habit of making jokes when I am uncomfortable, so I told him he could sign me up for a C-section because I was not mentally up for birthing what I thought would be a huge baby. He came back to where I was and put his hand on my belly and said that was not the problem. The baby appeared to be a normal size, but there was something wrong with his face. As I heard him say something about a cleft lip and or palate, I didn’t think he could be talking about my baby. It didn’t make sense.

We waited for Owen for so many years and paid endless amounts of money we couldn’t afford. How could there be anything wrong with him? To be honest, I wasn’t sure I even understood or could picture what a cleft was, let alone all the complications for a newborn baby. The doctor said he would call and get me an appointment with a maternal fetal medicine doctor who could use a 3D ultrasound to review his findings.

Courtesy of Jodi M.

I don’t know how I kept myself breathing as I walked to the parking garage and then to my car. But as soon as the door was closed, and I thought no one was watching, the tears started to flow. It was raining hard that November day and I had to try to drive home with addition of tears clouding my vision. I finally pulled over and decided to call my husband who was at work. I am not sure how he could comprehend a word I was saying. I was a blubbering mess.

He kept telling me that maybe the doctor was wrong and not to worry. He told me everything would be okay. But I knew otherwise. I knew something was different with this pregnancy. A lot of people told me that it was different carrying a boy versus a girl. But there was more to it than that. My anxiety had gotten the better of me the last seven months and this was just the answer to what had been eating at me.

Less than a week later, my husband accompanied me to the appointment with the specialist. It was confirmed that Owen would have a bilateral cleft lip and complete cleft palate. The doctor gave us a referral to a craniofacial surgeon, the NICU doctors at our hospital, and an occupational therapist so that we would learn the challenges of feeding this precious baby. She gave us a disc with all the ultrasound pictures that she had taken.

There were no words between my husband and myself until we got to the car. I was broken. I felt like I let everyone down. I told him it wasn’t fair, I wasn’t supposed to have a baby with a cleft. Somehow, I forgot that it wasn’t all about me. I didn’t ask him what he thought or how he felt. I just wondered how we would explain it to our daughter, our family, and the public.

I called my mom, dad, and my mother-in-law and explained that Owen’s condition had been confirmed. We googled images of clefts and it mostly pulled up children in third world countries that had not had their surgeries until they were school aged. It was difficult to look at. The surgeon told us that Owen would have his lip repaired at approximately six weeks of age, and his palate around one year of age.

Thanksgiving was the next week, so we took the disc and showed our family. Everyone was supportive and made it sound like it was no big deal and that after his two surgeries, he would be just like all the other kids. Little did we know that surgery was not going to magically repair our fragile child.

Christmas and New Year’s came and went in a complete blur. It felt like I couldn’t breathe, and I attributed this from the anxiety and stress of my fears. I was also diagnosed with polyhydramnios (too much amniotic fluid). It was hard to walk up the stairs to my bedroom and I spent most of the time in bed after I got off work. My husband and I worked opposite shifts and I was often alone with my daughter until midnight. She learned to be self-sufficient, which would later prepare her for her brother.

It was determined that I would be induced at about 37 weeks. After 12 hours of labor, we were sent to the operating room for an emergency c-section. I remember as I was wheeled down the hall, the anesthesiologist said I would need to be intubated because of my breathing and heart rate. I felt a surge of relief that I could finally go to sleep. My epidural had not worked, and I was in pain all day. As I was being transferred from the gurney to the table, Owen decided he was done playing games and started to come out.

The nursing staff rushed to get my husband who was getting gowned. My doctor told me to push and all I could think was, ‘NO, I was told I could relax and go to sleep.’ Just as Owen was coming, I turned my head to see my husband by my side. There were so many people in the room, and it was noisy. The NICU team took my baby upstairs and my husband followed him. The room filled with silence and it was now just me and my OB.

I felt scared, alone, and don’t even remember what my baby looked like. I was transferred back to my room and my husband came back with a video of my baby. He looked swollen and chubby. He weighed 7 lbs 3 oz. Looking at his lips, it seemed like not that big of a deal after everything we had been through. He was so sweet and all I wanted to do was hold him.

Courtesy of Jodi M.

He spent 4 days in the NICU and we learned to feed him with a Playtex nurser bottle with the drop-in liners. He could not suck because his mouth did not close all the way, so we would hold him at a 90-degree angle, squeeze the liner, and gently push the formula into his mouth.

When we went out in public there were occasional comments and questions about his condition. I was surprised that people didn’t understand the difference between a cleft lip and cleft palate. A lot of well-wishers tried to tell us that they have seen how amazing this surgery was and that he would be perfect after. No one realized all the extra issues that come along with this condition.

One surgery was not going to make everything better. I had to take him for bi-weekly weight checks, adjust his feeding schedule, and try to pump every hour to keep my milk supply up since he was unable to be breastfed. His feedings would take almost 30 minutes just to get in 2 ounces.

Courtesy of Jodi M.

He burned calories trying to eat, so he started losing weight. This delayed his first surgery. We were told that he needed to be 10 lbs to be considered safe enough for anesthesia. He was 3 months old and weighed 9 lbs when the surgeon decided it was time. He also needed ear tubes to let the canal drain because he had so many infections and he couldn’t pass hearing tests.

That night I could not sleep. We had to be at the hospital at 6 am. I kissed my baby goodbye in the pre-op waiting area and sent him back. I wasn’t worried about the pain or recovery. I just wanted him to live through the anesthesia. He came out hours later and his nostrils had collapsed so he had nasal tubes inserted to allow him to breathe. He was so puffy and bloody, but he was alive.

Courtesy of Jodi M.

He didn’t want to eat. Who could blame him? I can’t imagine the pain and confusion this little guy went through. It took him a few days and disconnecting his IV fluids to resume a normal eating pattern before he was released home. His recovery at home went great and we waited for the next surgery in less than a year.

At 13 months, he was ready for his palate surgery. We had to wean him from his bottle a month before, so he was just drinking from a sippy cup with no plug. He went in and we felt less stress than the previous surgery. There were no complications from anesthesia and he was out of the hospital the next day. He had to wear these arm restraints called no-no’s so that he couldn’t bend his arms to touch is mouth.

Courtesy of Jodi M.

I would be at the store and people would see this tiny baby in his carrier and what looked like broken arms. I felt like I got more dirty looks than when his lips were first repaired. Not many people would ask questions. They would only stare.

He had to have more surgeries that year to replace his ear tubes. He had a frenectomy (trimming the small piece of skin from under his tongue) done because he was tongue-tied. His tongue was attached too much to the bottom of his mouth and it would not reach to his palate to make the appropriate sounds when he tried speaking.

Courtesy of Jodi M.

He went through about a year of speech therapy and qualified for developmental preschool to help him. None of the other kids thought anything different, so neither did he.

One day, he was sitting on my bed and in a panic said, ‘I’m not normal.’ He must have been about 6 years old. I didn’t want to put words in his mouth, so I asked him what he meant. He looked down at his feet. The tears started to swell in my eyes, and he said, ‘One of my toes is longer than the other!’ All I could do was laugh. I laughed a long time and it really hurt his feelings. He doesn’t think that his facial features make him any different than his friends.

Courtesy of Jodi M.

He plays video games, enjoys Cub Scouts, rides his bike, and plays outside with the neighbors. He is just Owen, a little hyperactive ball of fire, not a kid born with a cleft.

Courtesy of Jodi M.

Because of the shape and structure of his teeth, they were hard to keep clean. This resulted in constant cavities and teeth growing in weird directions. He even had one growing from the middle of his palate! He has had 3 dental surgeries to have these removed and to make room for his adult teeth. The orthodontist placed a palate expander in when he was 8 and then braces to correct the angle of his top teeth. This made room for the bone graft he had done a year ago. They removed a piece of bone from his hip and implanted it in his upper gums to hold his front four teeth in place and allow for his adult teeth to anchor when they erupted.

We had heard horror stories about this surgery and expected it to be the worst. Because he was so little for his other surgeries, he didn’t remember and there was no fear. The night before this surgery he was very anxious. But he handled it like a rock star and was released from the hospital five hours later. He had to be on a liquid diet for a month and there was no physical activity allowed. For a kid with ADHD, this was not an easy task. But he survived and was excited to go back to school and to eat.

Since Owen, I have been referred to other new moms whose kids have been born with clefts. I am able to offer firsthand experience and a listening ear to calm their anxieties. Owen has made me both a better person and a better mother. He has taught our entire family to be more loving and accepting of other’s differences. He turned 10 this January and I can’t imagine my life without him.”

Courtesy of Jodi M.
Courtesy of Jodi M.

This story was submitted to Love What Matters by Jodi M. of Boise, Idaho. You can submit your own story here. For our best stories, subscribe to our free newsletter.

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