Happy Awareness Month to my beautiful and amazing, perfectly and wonderful butterfly sisters, their parents and families! This is a very important month for the TS community. Dr offices, social media, schools and workplaces are being filled with information on Turner Syndrome with the goal to raise awareness and facilitate research to improve quality of life for every butterfly and their families! TS sisters, you know how much I love you! I have said this many times and I will say it again- I am only a text away if you need anything! If you want my number, I will gladly give it to you! You are so important to me, and I won't stop fighting for you!
So, this blog is going to be a little different. I wanted to share WHY awareness is so important and why we do what we do. This blog may be hard for some to read but it isn't meant to scare you. It is meant to motivate you to be the change you want to see.
Jennifer Garret-Jones' little sister, Cassie, was 34 when she passed away from complications due to Turner Syndrome. I followed their story when all of this happened, and Cassie and her family really touched my life with their story. I direct messaged Jennifer asking her kindly to help me share Cassie's story. She graciously has done so! Here is what she gave me in response. I haven't changed anything or taken anything out! I hope this inspires you. I think what she says here can also save lives because she says her family learned about TS through their experience. Cassie's death sadly may not have happened if her medical team listened to her family from the beginning and had knowledge of Turner Syndrome.
Here is Cassie’s story. It is long but it so important so please read to completion!!!!!!
Cassandra Mae (Garrett) Garrett
February 2, 1986 ~ December 18, 2020 (age 34)
Cassandra “Cassie” Mae Garrett was born February 2, 1986. She grew up in Tuttle, was a National Championship Cheerleader, showed pigs, and was an FFA Sweetheart & Officer. In college she was in Alpha Gamma Delta sorority, RLCC honors program and school pride program, and graduated with two degrees in Early Childhood and Deaf Education. With a servant's heart and a special love for children, the Lord used her gifts to teach Preschool and Kindergarten in public and private schools, as a Children's Pastor, and through retail and restaurant industries. No matter the role, she was always drawn to serving others, and she was a friend to all. Cassie had a pure love for her family and especially her German Shepherd "Bear". She was proud to have accomplished independence by purchasing her first home and car and was on her way to soon becoming a foster parent. Cassie was a devoted member of her church, faithful to Jesus, and leaned into her faith in both triumphs and when facing obstacles. As a result, she has impacted lives in more than 40 countries.
What most people never knew throughout her very active and successful life is Cassie had Turner Syndrome (TS). She followed all recommended protocols, including having heart tests just months before the beginning of her end. With no warning signs, on January 30, 2020, Cassie had a massive aortic dissection. The severity and impact of the tear could have been lessened if the ER staff had been educated on TS and had provided a CT scan immediately upon check-in.
Cassie’s family had beat the ambulance to the hospital and prepared the intake staff that this could be an aortic dissection. Unfortunately, the EMT assumed Cassie just had severe indigestion due to excessive burping (every 15 to 60 seconds) and normal blood pressure and ultrasound. During check-in, her family helped her click the chest pain box. In the triage room, when her BP and EKG looked normal, her family told the staff they were taught by professionals it could still be her heart even if these tests come back normal. When she finally got back to the ER room, Cassie and her family were again ignored and treated like it was indigestion. Her pain was below her chest and not where you would expect typical heart pain. Her family even pulled up articles from Turner Syndrome Society of the U.S. and the Turner Syndrome Foundation websites that showed probable aortic dissection, but to no avail. It wasn’t until the doctor decided to do a CT scan of the stomach that he found it was indeed an aortic dissection. By the time she got into surgery – nine hours after arrival - her main blood vessel tore from inside her heart valve all the way down to her hip, and the surgeon gave her no hope of survival.
Cassie survived the initial heart surgery. However, it was almost five months before she would go home due to systemic complications that were a result of TS. It was two weeks before an ICU Intensivist doctor finally asked, “Tell me what you’ve been trying to tell me.” The blood vessels of TS Girls are narrow and leak fluid into the body quickly causing fluid overload which can impact the heart, blood vessels, veins, and entire body. Cassie had interstitial edema, meaning fluids were between the vessels and skin and connective tissue and so on, impacting the lungs. She had Vasoplegia which was the cause of her low Blood Pressure issues and exacerbated by surgery. Unbeknownst to her (it never showed up on scans), Cassie had partial anomalous pulmonary venous connection where one of the veins connected from her lung to her heart was misplaced. She had pulmonary valve and other coronary artery abnormalities as well. As a result, she ended up having multiple surgeries to remove fluid from around her lungs. She also had very narrow nasal canals, so had to breathe through her mouth which required an oxygen mask instead of a nasal canula.
The feeding tube was a great battle in and of itself. For Cassie, food had to go in the J tube to intestine and medications in the G tube to the stomach. It had to be flushed every 4 hours with warm water or coke or it got clogged, which meant she had to go back into surgery to have it replaced. Her feeding had to stay below 50 most of the time. This became such an issue that her family kept a sign posted by her machines and bed as a constant reminder.
All of this happened during the start of Covid when the world shut down. Cassie’s family had to get a disability lawyer to use the Disability Care Act to get permission for her Momma to stay as her Advocate. We share all of this not to alarm you, but so you can be educated on things to consider should you or your loved one with TS require surgery. Cassie’s intensivist doctor said, "This is a very complex case. We will do what we can do here, but the most powerful thing is we hope for the best," and he pointed his hands up to God. Indeed, Cassie and her family’s faith in God, the healing power of Jesus Christ, and the way they ushered in the presence of God into her ICU rooms is why Cassie survived her long hospital stay. The girl battled with so much faith, fire, and grace! But her family had to fight just as hard – advocating for her with doctors and nurses and through their Christian faith.
When she left the hospital after 69 days, Cassie was moved to a specialty rehab hospital where they repeated many of the same mistakes that the hospital had due to lack of knowledge about TS. But Cassie pulled through, and after 134 days (4.5 months), she got to go home where her hometown welcomed her with a parade of more than 90 friends and family lining the streets with purple shirts, welcome home signs, and balloons in honor of Cassie and to shine a light on TS awareness!
What is important for Turner Syndrome families to know, based on Cassie’s experience is:
A) Make sure your TS Girl wears a medical bracelet 24/7 stating: High probability of aortic dissection; Require CT Scan to confirm.
B) When you call 911, talk to EMT, and arrive at the hospital, if your TS Girl is having chest pain or even stomach pain, demand a CT Scan. Keep in mind the aorta can tear at various points along the blood vessel.
C) Make sure your TS Girl has an Advocate (or two) who understands TS complications with them 24/7 so they can fight on their behalf. Use the Disability Cares Act if you have to. For adults, remind them when they check-in to sign a form for their chosen Advocate/s to be able to access all their medical information and speak with doctors. This will empower you to fight for them if they’re rushed into surgery.
D) Make sure anyone treating your TS Girl understands the probability of leaky, narrow blood vessels causing fluid overload. As a result, insist on them using a Vein Finder anytime they have to get an IV, labs, etc. as it will be much easier on them.
E) If they have to get a feeding tube, make sure the nurses and IR team understand they need to be handled differently due to TS. For Cassie, food had to go in J tube, meds in G tube, and flush every 4 hours.
F) Consider an oxygen mask over a nasal canula if they have narrow nasal canals.
G) Make sure your TS Girl has all paperwork in order now, including an Advance Directive, Medical Power of Attorney, Durable Power of Attorney, and Will (all different documents). It is extremely difficult for a trusted family member to keep her car, home, and bills taken care of if they do not provide them authority in advance. Advise your TS Girl to keep a copy of these files saved on email that she and her Durable POA can both access from their cell email anytime to easily forward to medical staff in emergent situations. Also make sure the Durable POA has the code to her cell and essential passwords such as email, medical apps, etc.
H) Grow your faith and your fight! They will be your rock, your hope, your salvation, and your peace.
Just as her family tried to get the medical staff to consider, Cassie’s Turner Syndrome diagnosis led to an aortic dissection. The aortic dissection led to heart failure, which led to her death – as was stated as cause of death on her death certificate. In her last week on earth, no one knew she only had days left. She wasn’t feeling well, but she did not have Covid like many suspected. The family learned after it was too late her difficulty breathing was due to fluid overload again. She had gone to the ER that Monday and they said her symptoms were not bad enough to keep her since they had too many Covid patients filling beds, so to bring her back if her symptoms worsen or if she gets Covid. That Friday, Cassie died peacefully.
Her family believes Cassie caught a glimpse of Heaven during one of her surgeries. There came a point when Cassie was tired of fighting and was ready to go to her Eternal Home, and when that moment came, she asked her Momma to go get her prescriptions, cuddled up in her favorite chair with her hands tucked in prayer position beside her face, and Cassie went to her Heavenly home peacefully at the age of 34 that Friday, December 18, 2020. When Cassie opened her eyes that final moment, she was in the presence of Jesus. She fought the good fight, finished her race, and kept her faith. She won her final battle. Cassie’s fight and faith will forever be a light to all who hear her story. And her family will continue to Advocate for Turner Syndrome awareness and education so more TS Girls and their loved ones can grow their faith and their fight, like Cassie.
Written by her sister, Jennifer Jones, 2/2/24
If you have a butterfly in your life, I have a very special challenge for you!!! Please tell at least one person in your life about Turner Syndrome!! It can be as simple as saying it is a genetic condition that results in the complete or partial absence of the 2nd X chromosome. When you tell someone, tell the butterfly in your life what you have done! It will mean more to them then you will ever know!
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