Living with a birth defect
I was born with bilateral cleft lip and palate in Kursk, Russia in 1997. My biological parents were young, only 22 or 23, unbeknownst to them the decision they would soon have to make, the turmoil that was about to ensue. They had no idea there was anything different about me when I was in the womb. All they knew was that they were more than happy to have a baby girl.
I often picture in my head what their first words may have been when I was born into this world, taking my first breath. Was it “oh god, what’s wrong with her?” And what happened after that? Though I got in contact with my biological father in 2020 through Facebook (an incredible experience), I had enough tact to know not to ask that question, no matter how curious I still am of their first impressions of me.
To my biological father’s account, they were told that they could not get me the help I needed in Russia, especially during that time. The doctors said my best chance was to be adopted by a couple from a different country, potentially the United States, and get the immense amount of surgeries I’d need some place else. My biological parents took this advice, and I was put up for adoption about a week after birth.
I don’t have too much information about my living in a Russian orphanage. Perhaps all the information I have from that period of time is psychological; an anxious-avoidant attachment style, and memories of feelings that emerge from putting in the work in experimental early trauma EMDR therapy.
I was adopted by a Greek-American couple at 7 months old. They brought me to Washington DC, USA on February 10th, 1998. A month later, the surgeries began. Complete cleft palate repair, ear tubes, fistula repairs. Over the years, I learned of more surgeries and bigger words and bigger feelings and the insecurities I was designed to have.
Some of the issues I dealt with from having bilateral cleft lip and palate include: only being able to breathe out of one nostril (still), having a lisp and an extremely nasally voice until I was 22 years old, struggling with eating for as long as I can remember (my adopted mother says when I was a baby I would grab food and use my fingers to put in the back of my throat when I wasn’t able to eat properly), food and drink going into my nose through my palate (vomiting was excruciating because of this), constant ear infections, ears constantly being clogged due to a small middle ear canal (hearing is inevitably a problem). Feeling different from others. Severe social anxiety until I was 23 years old. Severe general anxiety. Having multiple surgeries almost every year of my life.
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Some of my surgeries include:
- Two hip bone grafts, which entails moving bone from my hip into my mouth because I did not have enough bone in my mouth to support my front upper teeth. Funny enough, these didn’t even really help too much. My front teeth still continued to decay and slowly fall out.
- A tongue flap at age 13, which necessitates cutting off a piece of my tongue, sewing it to my palate, and subsequently sewing the rest of my tongue to my palate for 2 weeks. I was unable to speak or eat for 2 weeks. I drank lots of smoothies (no straws allowed!), and the doctors gave my adopted mother a weird recipe book that advised her to blend cheeseburgers for me to drink. Yum, cheeseburger smoothie, I love getting in my vitamins and nutrients. This was right before smartphones were really starting to be a thing, so in order to communicate I had a whiteboard and a dry erase marker. Being an angry child, I would write in all caps at my family constantly. I don’t remember too much of my childhood, but I do remember this being a very traumatic time. At least I never did drink a cheeseburger smoothie, so it could have been worse.
- A pharyngeal flap at age 22 to improve my speech. This was definitely my favorite surgery of all, as it got rid of my lisp entirely and I could finally say my s’s and z’s. Having a lisp and being misunderstood constantly was a huge insecurity of mine, and highly contributed to my social anxiety. What was the point of talking, of people getting to know me, if I would just be embarrassed the entire time? I joke that I was meant to meet my now-husband after getting this surgery since his first name has 2 s’s in it.
- Rhinoplasty (a nose job) at age 14. I’ll rank this one as my second favorite surgery. Prior to the rhinoplasty, my nose was very flat and bulbous, though the tip of my nose can still be described as bulbous. This surgery also helped make it a bit easier to breathe through my nose, though I’m still really only at 50% capacity there unfortunately. I’d love to have another rhinoplasty done to improve the shape of my nose and my breathing ability, but that doesn’t seem to be in my financial capability at the moment.
- Tons of ear tubes. I feel like there’s a landfill out there just filled with my used ear tubes. I don’t have any in at the moment, and I haven’t been to an ENT (ear, nose, and throat) doctor in a long time out of fear (those were always appointments filled with shame for me), but I do know I need to do something about my ears soon. They’re getting bad again. Constantly getting clogged with wax, hurting, causing vertigo by messing with my equilibrium, ear infections every couple months. Fun fact: when I was on the plane over to America from Russia, I had a double ear infection that no one knew about. Apparently I cried and screamed for the entire 10 hour flight, except for the last 30 minutes.
- Though this isn’t really a surgery, I had braces for 10 years, then Invisalign for a year, and 5 fake teeth on my upper front teeth. Going to the orthodontist and dentist every couple weeks nearly my whole life has been absolutely exhausting. Now that I have beautiful teeth I take the utmost care of and am so proud of, I am so damn tired of going to the dentist.
- Not described: a slew of other surgeries that blend together in my mind.
I’ve lost count of how many surgeries I’ve had. I can’t remember a lot of them. But they have made a lasting impact on me, and after years of therapy I have been getting better. I no longer have severe social anxiety. I have realized I am a lovable person, that my birth defect (my therapist has me call it my superpower instead because it’s more empowering. I think it has given me the superpower of compassion) is not the most important or interesting thing about me. People may be able to see there is something ‘wrong’ with me upon first sight, but there is so much more substance to me as a person.
A lot of the surgeries have helped, too. That was the point of many of them, I will say.
My difficulty with the physical act of eating — as well as familial trauma I endured growing up — resulted in an eating disorder that I have healed from. But I can now physically eat perfectly fine, occasionally I will still get drink or food going through a fistula into my nose, but luckily this has become rare. I also highly enjoy cooking and eating. Watching my relationship with food change so much over the years is one of the most beautiful and gratifying things in my eyes.
I can speak with clarity, and a lot of the time I speak my mind and don’t have to worry about being misunderstood.
I still struggle with breathing through my nose, and I hope to one day be in a place financially where I can get another surgery on my nose and be able to breathe freely through both nostrils. That sounds divine.
I feel like bilateral cleft lip and palate isn’t something that’s talked about a lot, even though it does affect 1 in 700 live births. It feels so isolating to go through something that was so impactful upon nearly everything in my life, yet no one that I knew really knew what it was, or what I was going through. Growing up, I just felt like an alien, someone you could look at and knew that she should not be part of the pack. I don’t typically see people who have a bilateral or unilateral cleft either — I mean, really only every 700 people do I see one! And anyway, it’s not exactly socially acceptable to start talking about the deep medical issues you have in common with a stranger. However, it is always nice to see someone who understands, even if we don’t talk about it. It’s kind of like that meme of Spiderman pointing at himself, except that’s just happening in my mind. Places like r/cleftlip are wonderful because it’s the first place I’ve felt understood, and talked to other people who know what a fistula or a pharyngeal flap is.
Maybe being more open about things like this will lead to more meeting of kindred spirits. It always feels worse to feel isolated and alone in the face of ongoing trauma. I finally feel strong enough, brave enough to talk about it. I’m facing the little shame I have left about my traumas, and telling myself that it’s more important to be open than to try and put on some facade, or pretend like what’s real isn’t real. There are many days I’ve tried to stuff down my insecurities, or pretend that I’m someone else, because then my issues aren’t relevant, right? I think now I’d rather face it all head on, and make a difference in my own life, and maybe help others feel a little less alone as well.
