Poland Syndrome is rare and people who discover they have this syndrome can often feel isolated.They feel they are the only person for miles around with situation and no one else really understands.
At PIP-UK we continue to share stories of people with Poland Syndrome who describe their life experiences in the hope that this site will be found by those in need and offer some comfort. You are not alone!
The “Experience Project” is a great resource for reading other people’s stories who have Poland Syndrome themselves or a child with Poland Syndrome. Today we share a story from a woman who tells us about her life so far, living with poland syndrome.
Living With Poland Syndrome My name is Julie. I’ve known my whole life that I was born with Poland Syndrome. I was missing ribs, I am missing a breast and muscle pectoral muscle. I have dextra cardia which is a flipped heart. I found out recently that is common with Poland Syndrome.
When I was born, I was premature and blue. Doctors told my parents I wouldn’t make it through the night. But I did. They told them that my heart wasn’t good and I wouldn’t last the week. But I did. They did a heart cath, heart just fine. Two years of doctors and hospitals and my diagnosis of Poland Syndrome. They built ribs for me. They placed a tricot mesh material over my lung to protect it. All I survived. My family called me the miracle baby.
At first I didn’t know I was different. My Mom had a mastectomy on the same side breast as I was missing. So I didn’t know I was any different. Then I started developing on the other side. I knew quickly I was. I was in JR High and got picked on. I would dress in the bathroom stall or learned to get really good at changing shirts with one around my neck while blocking my chest. The kids were relentless. But then I had breast surgery and added a breast at 15/16. Got some really great friends and a boyfriend and life was good.
My Mom told me early on that just because I have it doesn’t mean it defines who I am. Only I can do that. So I didn’t let it stop me.
Oh sure it was awkward telling my boyfriends about it as years went by, but they didn’t care. They loved me despite that. That’s when I realized love comes in all shapes and sizes.
Years went by, I got married, had a baby. My Mom was nervous my whole pregnancy. It wasn’t until the next day I found out why. The doctors told her because of my Poland Syndrome I couldn’t bare children. She didn’t believe them. So never told me. Til that morning after I gave birth to my son… And naturally with a midwife to boot! She cried and said I knew you could do it! I knew those doctors were wrong! It’s truly a miracle! So the miracle baby had a miracle baby. I got to bring my son home on my birthday. Not one part missing or out of place. He was perfect. The best gift I ever got.
Fast forward 14 years later. I am training for a 100 mile bicycle tour called the Ride for Missing Children. It’s my 2nd year. Only this year I had a lot of trouble breathing. I am physically fit, great shape for my age and trained 3 to 4 times a week on the bike. But still trouble. I was diagnosed with Asthma a few years back. I thought it was induced. So went to my doctor to get a check up and more asthma meds.
They suggested I see a heart doctor. Common symptom of heart disease in women… Trouble breathing. Also I have a heart murmur and my Dad had just died of heart disease the year before. So they strongly recommended I do this. Of course it was two weeks before the RFMC ride!
So I went. Saw my Dad’s old heart doc. Best in area. He did an EKG. Had liw CT depressions. Recommended a stress test. Went back next day. Passed it, but when I got too high with Heart Rate, my most exerted part of exercise, my CT dropped below the line. He didn’t like that. Said I should have a heart catheterization. I told him not until after my ride. He wasn’t crazy about me riding. Told me not to go over 140 HRM. (I average 146 to 156 when riding!) I knew with all that training I could do it. So I did it anyways. I finished the ride. Never had to stop except for planned breaks. I felt great! Still had trouble breathing going up hill. But I just moved over to side and took my time going up them. Then recovered quickly at the top. That ride is soo worth doing!
Anyways, I did the heart cath that following Wednesday. My heart is fine. Nothing wrong other than the dextracardia.
So they did a chest xray and CT scan and noticed between my heart and my ribs from the PS, that it is possible my lung can’t expand fully when I need it to and that is whats causing the breathing trouble. So next I am going to see. Pulmonologist. Hoping they can figure it out.
Got on here to share my story, but also hoping to find out if anyone else went through same issue and what they have done about it? Any feedback would be much appreciated.
Meantime, regardless of my PS, I am not going to stop living my life. I am training next for the Syracuse RFMC ride is September! 😉