Poland Syndrome – Female Experience.
Today we share a story sent to us by Elizabeth Page:
When I was born 31 years ago, my ribs were concaved. My mom said it was kind of as if I was folded in half. They rushed me off and after a while let my dad know what was going on so he could explain it to my mom. My right foot is smaller and webbed, so was my hand. I also had malformed ribs and what looked like no chest tissue on my right side.
At 18 months I had an operation on my hand to separate my fingers. The physical Therapist suggested pushing me down to crawl because I tried to skip crawling and instead become a late walker.
At the age of four, I was hospitalized for a pretty significant kidney infection. My mom had to miss her sister’s wedding while I was in recovery. My mom had issues with urinary potty training and had told them something seemed to be wrong. They gave me an ultrasound and said that the tube connecting to my kidney looked a little small. They said I had kidney anomalies. They also said that it looked like my bladder may have been smaller than normal. I struggled my entire childhood with infections and occasional, but fairly regular urinary incontinence. It definitely had an impact on my confidence.
I also had a lazy left eye (connected to the right brain hemisphere). I’m unsure whether that was Poland Syndrome related, but it was corrected through large amounts of therapy. By the time I was in third grade and I no longer needed to wear patches or glasses.
I had a friend that thought my hand was cool in middle school and would bring it up when I met other friends. I felt like a circus show and didn’t appreciate the attention that much. Really he was just a 12-year-old boy being a 12-year-old boy though.
My mom started sewing nursing pads into the right side of my bra about that time in my life and I started going into the bathroom stalls to change during gym and the girls started whispering. In high school, one of my bras fell out of the locker and a girl caught a glimpse of it and started telling everyone that I was completely flat-chested and that I stuffed my bras. Another friend (who didn’t understand my birth defect) told me I should just flash her to get her to shut up. High school girls can be mean. I feel like everyone has stories.
The same girl started walking through the halls and making fun of my posture. I always tilted my head slightly to the right and I parted my hair on that side as a security-related thing with kind of veiling my chest deformity. A boy (that I rejected dating) started talking about in class after I left the room that there wasn’t a single thing symmetrical about me. That I looked like a female humpback of Notre Dame and that even my face was asymmetrical. I sat and cried in front of a mirror for hours.
I had good friends and many good experiences in high school as well. Between my ADHD and my birth defect overall, it was a hard experience though.
When I was 16 my aunt (who I lived with) did everything she could to get things lined up for my implant surgery. At the end of the summer, I got the surgery as well as another surgery on my hand and for the first time in a long time, I felt almost normal.
I was really young though. I had been given the recovery instructions and was in cheerleading. I was supposed to sit out on warmups, and basically everything else for 6 weeks. I was dealing with some bullying in my squad too though. One of the girls continuously complained about me sitting out. ” She just had surgery on her hand. How come she isn’t doing anything? She’s just lazy.” I let the lazy comment get to me as other teen girls might have and wanted to prove I was not. I started pushing myself to do things like just jog and other things the doctor had recommended I not do.
I woke up one morning and realized my stitches underneath my breast were open and that my implant was exposed. My aunt was furious that I wasted thousands of dollars because of peer pressure. She dropped me off at the hospital door. I walked up to the plastic surgeon’s office and they immediately wheeled me into surgery. They put up a blanket so I couldn’t see. They popped the implant and the warm water ran all over my body and I could do nothing but cry and the surgeon held my hand. I had to go that entire year with the scar and no implant.
At 18 I had surgery again but this time with an expander. I have not gotten it removed and still have it now. I’ve been looking into my options.
I became a teen mom and had a daughter at 19. I got married right out of high school and then divorced at 24. My oldest daughter (I have 2), has Abernethy malformation an even rarer birth defect. It’s a rare vascular malformation that affects the liver and has caused her to have large bouts of bleeding and bowel incontinence. The bleeding can leave her anaemic and her skin blotchy. We found a specialist in Chicago (there hasn’t been one up until recently). He seems to think he can help with all of my daughter’s symptoms. Which is beyond exciting after over 9 years of going in circles with specialists and travelling out of state multiple times a year for medical care (8-hour drives to and from our home to our destination).
I’ve breastfed and gained weight. I definitely have some degree of body dysmorphia. I’m hoping I’ll be able to get surgery to get the expander removed soon. I’ve looked at the diep flap surgery because I don’t want to have something foreign in my body anymore. Nobody in my state offers this surgery (Montana) and I’m insured under Medicaid. Clinics in other states that I have found so far are unwilling to take the out of state insurance.
I’m a student and a single mother. I feel like I have been able to empathize and advocate for my daughter in a way I wouldn’t have been able to though had I not gone through my own experience. I’ve been hospitalized 4 other times for kidney infections and I’m just barely seeing a specialist in that area to explore that more and hopefully take better care of myself.
I genuinely feel that we have the option to become bitter from our hard experiences or find strength in them and find ways to connect and help other people through them. Sometimes it’s a touch of both and that’s okay too.
I’m grateful for the community and education on this website.
Thanks for reading my story.
Thank you to Elizabeth for this honest account. We know stories like this help our community to understand Poland Syndrome better. People feel less alone when they hear from others about their experiences. If you would like to share your own story you can do that here.
OMG Thank you for your vulnerability. It gives me the courage to put my own story on here…one day. I’m 36 F and much of my presentation and some experiences throughout different stages of adolescence were eerily similar. Ever since finding this group it’s true I feel less alone when I hear from others about their experiences.
We are pleased you found us. If you’re on Facebook we have a private Facebook group that you can join. Here’s the link PIP-UK Poland Syndrome Support Group