Turner Syndrome is a Puzzle We Are Collectively Solving - by Cindy Scurlock
Years ago, my sister said, “You’re so lucky to have a job that you love and to know that at the end of every day you’ve helped people and Brooke.” I cried because she was right, but I also was overwhelmed because I hadn’t found the balance of living “Turner syndrome” every day. After Brooke and her sister loaded the bus, I put on my TS work hat, once I returned home, I put my TS mom hat back on. My story involves MY personality and needs, and I’m a “fixer”. A problem is presented, and I want to fix it, or at least help someone else fix it.
Almost 26 years ago, Brooke was tentatively diagnosed with TS in the delivery room. I felt like I had been given a bag of puzzle pieces (with no picture) and a timer. After spending four days watching her in a warm plastic box in the hospital, her pediatrician said she needed to go to another hospital 3 hours away because she needed further tests and could go into cardiac arrest at any time. The timer to saving my daughter’s life began counting down. In about 3 months, we put enough puzzle pieces together to realize Brooke was safe. Safe allowed me to exhale my worries and begin enjoying my silly little girl.
After spending countless hours reading every bit of TS information available, I wanted to learn from others. Our local TSSUS group wasn’t active, so I volunteered to take it over as the group leader. I would have loved to have attended the TSSUS conferences but at the time, we couldn’t afford it. We paid over $500 a month for growth hormone therapy (with insurance)! Doctor, radiology, and EKG bills were a separate puzzle: who knew you paid 3 different bills for one appointment?
I remember questioning my sanity when I was driving by a hospital in a nearby town and saw a sign that said, “Lymphedema Clinic”. Brooke had lymphedema. Doctors said the swelling in her feet would go away when she was 3 months old, a year old, then they said, buy larger shoes. I tried; we had a mini shoe store in her closet, but few fit. Brooke LOVED shoes, especially the noisy ones when she stomped on the floor. So, I made an appointment with the lymphatic specialist because the problem needed to be fixed and it was! After a summer of swimming with stretch bandages on her feet and legs, then lymphatic massage therapy, her little feet were less swollen, and shoes fit! She eventually got toenails big enough to paint - much to her delight. Another puzzle piece added to her TS puzzle.
Making decisions for Brooke was hard. I remember struggling with decisions for surgeries. Will she care if she has extra skin on her neck and her ear’s stick out when she’s older? Will she be able to drive easily if her body is restricted by the tightness of her neck? Will she have scars, will she hate the scars, oh my! The plastic surgeon recommended surgery before kindergarten; the timer was ticking!
Just like real puzzles, Brooke’s TS puzzle keeps us inquisitive. We wonder if something is TS-related or not, sometimes trying something works, other times we’re way off. We strategize, take a break, lose ourselves in the process, but recognize the process is our own. The puzzle is often slid under the bed, we’re aware it’s there but tended to when we have time to regroup and regain our energy. I am so proud of Brooke as she schedules her doctor’s appointments on her own, takes her medication routinely, exercises, and takes care of her physical and mental health. TS is a part of her life and always will be, I feel the same.
“The End” would fit nicely but MY story has an imaginary timer. Brooke has a bicuspid aorta, which is associated to aortic dissections. In February 2022, a pediatrician who had TS passed away from aortic dissection, leaving behind a loving husband and 4 beautiful children. No one’s story should end so tragically, that’s why in my own story, I’m the protagonist passionate about the Turner syndrome puzzle that we are all collectively solving.
Cindy Scurlock, President & CEO
The Turner Syndrome Society of the United States