Your Life is So Valuable
My name is Brooke Staton. I'm currently a freshman in college. I'm majoring in diagnostic cardiac sonography. I'm so excited to see what God has in store for me. I hope my story can give hope to young girls growing up with Turner syndrome, and to new parents learning about their daughter's diagnosis.
I've known my whole life that I have Turner syndrome. When my mother was pregnant and went for her 10-week ultrasound, my parents received the news. The ultrasound technician found a sac of water on my neck called a "cystic hygroma.”
Further in-utero testing revealed that I have non-mosaic Turner syndrome. My parents leaned on prayer and faith to get them through. The pregnancy was high risk, considering that only 2% of baby girls with Turner syndrome are born alive. My parents prayed, and God blessed, and I was born. I feel very blessed and thankful.
The journey didn't end at birth. When I was born, my parents knew I had a narrow aorta. However, the cardiologist treating me said my aorta was not significantly narrowed enough to be concerned about at the time. My parents brought me home, and all was well.
When I was two weeks old, things took a turn. My parents had noticed I wasn't acting quite right that day, and they just continued to keep a good eye on me. Things took a very drastic turn, and I started turning grayish-blue, so my dad called the squad (paramedics/ambulance). The squad arrived and decided to call in life-light. They met life-light on the way to the hospital, and I was then air-lifted to Nationwide Children's Hospital.
Children's Hospital stabilized me, and that’s where we met my current heart doctor, Dr. Cassidy. I have been under his care since that night. Dr. Cassidy found that my aorta was much too narrow and that I was in congestive heart failure. I needed surgery to "open" my aorta. The surgery was a great success. I recovered well, and after a week in the hospital, I returned home.
I have yearly follow up appointments with Dr. Cassidy, and so far, my heart has always checked out healthy. I've had numerous EKGs and echocardiograms. I've had an MRI of my heart, and have done a couple exercise (stress) tests. I also had to wear a blood pressure cuff monitor for 24 hours. My heart, to my doctor and our amazements, has always been fine.
My family and I give all the credit to God for healing me. Along with my heart, I've had other medical issues because of Turner syndrome. When I was in Kindergarten, I had tubes placed in both ears. A few years ago, I had tympanoplasty surgery to repair a hole in my right eardrum.
I took growth hormone shots for about 3 years, and grew to be 5 ft. 2 in. I remember being upset and scared to start growth hormone shots. It was a nightly shot that my mom would give to me 6 nights a week. Once I started taking them and got used to them, it become like second nature and they didn't bother me anymore. I have no regrets about taking them, and would encourage anyone making the decision, to take them. You'll get used to it, and it'll be better. I still see my endocrinologist regularly.
Because of lymphedema related to TS, my left foot is always swollen. I love shoes, and my swollen foot makes it difficult; I have a love/hate relationship with shoe shopping. My foot swells more in the summer, or if I have a lot of sodium intake. I've had tests run on my kidneys and thyroid, and none of the testing has revealed anything of too much concern.
I live a happy and healthy life. Turner syndrome is a part of me, but it does not define who I am. It has never and will never stop me from achieving my goals and dreams. I'm so thankful to God for bringing me through all the struggles I've faced. I'm also thankful for the supportive family and friends He has blessed me with. He also blessed me with a wonderful team of doctors.
My mom is my rock; she has always been there for me and goes with me to all my appointments and knows how to make me feel better. I've played sports, started college, made friends, and have lived such a good, full life.
So, to all the young girls facing Turner syndrome, it does get better and your life is so valuable. I’m thankful for this opportunity to share my story I believe God gave me to share as just one example of His goodness and mercy. God Bless!
by Barbara Duffy, RN, MSN, CPNP
Video Pressentation from the Turner Syndrome Society of the United States 2016 National Conference, Cinicinnatti, OH July 23, 2016
Patient / Family Version Clinical Practice Guidelines for the Care of Girls and Women with Turner Syndrome Order a Free Copy Here