Rose creek , Minnesota
I was 38 weeks pregnant and a health nut wanting my baby to have the best start possible. I craved fruit and was blessed with an easy first pregnancy (minus the morning sickness) and at a weekly checkup when I demanded my doctor confirm my daughter's positioning. I had a gut feeling she was breech and I couldn't drink enough water to satisfy me. I also felt like she was running out of room or running dry in there. The doctor thought I was crazy but it felt like she was rubbing and catching on a dry surface. He rolled his eyes saying "I think she's just fine." I reminded him that "think" is not positive or a "for sure" thing. I told him I wanted my "all natural birth" and I knew there was time to flip her. He let out a big sigh reminding me that " cesareans are common and easy" and ordered a quick bedside ultrasound...as soon as it hit my stomach the look on his face dropped and he ordered me upstairs to have my daughter flipped due to breech presentation. During another ultrasound to confirm positioning and fluids for my little girl before flipping her, they realized she was very low on fluids and soon to be in distress. I was scheduled for an emergency cesarean that night. The entire time I prayed my little girl would be ok, I've always dreamed of having a little girl and the entire time while they were cutting away to get to her I dreamed of what she'd look like. (The doctors told me jokes to keep me lighthearted) When they finally lifted down the curtain to pull her up so I could see her I saw the look of concern in their eyes. They lifted her and I saw the most beautiful baby girl and I cried, there was my little Cora Jean with swollen hands, legs, and labia. They took her away and rushed her to a table a few feet away not telling me anything. When they finally brought her to me they explained that although she was a normal 7 pounds 10 ounces . She was very much squished inside of me and due to her breech position she has some swelling that should go away in time... during the three days in the hospital nurses kept coming in try and pinch and squeeze her hands a photographer came and hid her hands during pictures. I thought they were the most beautiful hands in the world and I refused to purchase pictures due to the photographer feeling she should "hide" them. I chastised a nurse for just touching her hands out of curiosity... she's a person! Upon discharge, I read at the bottom of the paper "diagnosed with primary lymphedema " I was so confused because I was told the swelling would subside. It wasn't until a follow up appointment a few days later when my daughters pediatrician gave us the news. She was diagnosed with Primary Lymphedema. I've spent almost every night since finding ways to help her and to understand what "lymphedema" even is. I found out my daughter Cora, has a particular form that is very unique and at that time it only appeared to affect her hands, labia, and right foot. After trying almost every form of compression garments, custom as well, MLD, and other wrapping techniques we still haven't been able to reduce her fluid volume or size. We are so grateful to have had a wonderful team from two different hospitals Olmsted Medical Center and Mayo Clinic collaborating together on that. Coras right hand has continued to grow larger. They both have pointed us in the direction of genetic testing and more counseling for caring for her lymphedema. Meanwhile we had a hard time finding shoes that fit and forget anything with sleeves unless it was a VERY stretchy or forgiving material. We gotten a lot of looks and comments and I even had a woman chase me down a grocery store isle saying "ma'am you left a rubber band around your daughters hands! They are swollen" . We've had parents pull their children away from her and lots of looks of disgust to looks of worry, concern, and kindness. What's sad about children is how adults think they can be less "filtered" when talking about them. Recently we had a doctor look at her and compare them to boxing gloves and smile. I myself have made it my life purpose to advocate and spread awareness I've gained and grown an extensive armour of knowledge to teach others about her and her diagnosis. I carry around lymphedema awareness cards and give speeches to those who ask and I've even gotten brave enough to approach those who haven't but stare wondering. I've shown them how they can help. I emphasize how she is a normal little girl who loves the same things as others and she isn't any different than any other normal little girl. I've had to explain to others and “no you can't catch what she has”. I've tried to be her advocate through and through. I always will be. Fast forward now to 20 months. We have found though a recent lymphoscintigraphy this summer that there are no visible lymphatics in her hands. As of a month ago we have also found through an MRI she has extensive Lymphedema throughout her hands, forearm, and entire lower body. Lucky the fluid in her abdomen is subcutaneous. Genetic results so far are normal but still are in process. My husband and I have chosen to not have more children until we can narrow down if this is something we could have prevented, carry genetically, or if it was just something that happened. Little Cora continues to grow and is incredibly smart and empathetic to every situation. She is incredibly kind and caring. She's sassy, witty, and brave. She is starting to notice now her differences, sometimes at night she will study my hands as she drifts of to sleep and study her own. Her diagnosis of lymphedema other than appearances has not hindered her in any way. She has fought one case of what they think might be starting cellulitis. For now, I practice MLD to keep her skin soft and her fluids dispersed. Compression has proven futile for a toddler and even when sleeping she's ripped it off and we have tried everything! Her body still doesn't respond even with aggressive compression techniques and Mayo Clinic has been at a stand still on treatment options or even where to go in order to help her further , because she just doesn't respond like a typical primary lymphedema patient. Other knowledgeable hospitals won't take her case because they simply don't know what to do to help. We are hopeful that a clinic in Germany looking at her case may have more insight. For now, in continue to connect with other parents, children, and adults suffering with or from Primary Lymphedema. I strive to build a positive network for my little Cora so that someday she can relate to and connect with those people who suffer like she does. I continue to strive to instill in her a positive view on her diagnosis as well a a good set of morals, values, and empathy for others.