17. Carrie Creed - Dealing with Ehlers Danlos Syndrome then Placenta Previa to Increta
Carrie Creed was born in 1982 with the rare genetic condition called, Ehlers Danlos Syndrome. The Ehlers Danlos Syndromes (EDS) are a group of heritable connective tissue disorders generally characterized by poor wound healing, hypermobile joints, and soft velvety skin. There are currently 13 distinctive types of EDS, the most common being Hypermobile Ehlers Danlos Syndrome (hEDS) which is the type that has affected Carrie.
Carrie’s first surgery relating to EDS was in the spring of 1999 when she was suddenly unable to walk. Doctors shortened the ligament in Carrie’s right leg that had “stretched” out and by doing so, her leg realigned. Carrie went through months of physical therapy to regain strength in her leg and to be able to walk again without any assistive devices.
After Carrie’s freshman year of college, she noticed her leg bending similarly to how it bent in 1999 before her surgery. Within a week, she was unable to walk again. On September 12, 2002, Doctors performed a double rotational osteotomy on her femur, tibia, and fibula. Basically, the doctors completely sawed through her leg in multiple locations and then rotated the bones to realign her leg. They then inserted 12 extremal rods to hold her leg together. Even though the surgery initially went well, Carrie contracted a serious infection and also needed a second emergency surgery. She spent 73 days in the hospital while enduring painful physical therapy daily. Unfortunately, her leg wasn’t healing properly and there was no longer a benefit to staying in the hospital. Carrie was discharged a few days before Thanksgiving and spent six months in her family’s two bedroom apartment in a hospital bed that was setup in the living room. She had physical therapy 3x a day and was unable to get out of bed without the assistance of two people. A few weeks after Carrie turned 21 years old, the infection got worse and she was rushed back to the hospital to prepare for surgery and the possibility of losing her leg.
On May 29, 2003, the pins were removed and miraculously doctors were able to save Carrie’s leg even though the bones were only ~20% healed at the time. A custom made brace was made for Carrie to wear 24/7. After a few weeks of in-patient physical therapy, Carrie was moved to the Philadelphia Ronald McDonald where she and her mom lived for another five months. Carrie took a wheelchair van each morning to out-patient physical therapy and completed countless hours of full body intensive physical therapy each day to learn how to walk again. Throughout this time, she regained almost full mobility in her leg (a positive side-affect from EDS).
A year later, Carrie returned to college in September 2004 and she graduated with honors in May of 2007. Carrie continues to live in daily pain and has some physical limitations due to the realignment of her leg, but she is tremendously grateful to be able to live a fairly active lifestyle. She attributes her recovery to the positive mindset and focus both she and her Mother had while going through this arduous time and the determination of never giving up hope and pressing forward.
Carrie and her husband, Jamie learned in August of 2017 that they were expecting their second child. (Their son, Tristan was born on February 3, 2015.) Things were going well throughout her pregnancy, but during Carrie’s 20 week ultrasound, she found out she had Placenta Previa. Placenta Previa occurs when a baby's placenta partially or totally covers the mother's cervix — the outlet for the uterus. Placenta Previa can cause severe bleeding during pregnancy and delivery. On January 5, 2018 at 25 weeks pregnant, Carrie started severely bleeding. After being taken to the area hospital and then transferred to a hospital with a Level III NICU, she stayed there on bedrest for 65 days.
While on complete bedrest, Carrie’s condition worsened and her condition changed to Placenta Accreta and then Placenta Increta. Placenta Accreta is a serious pregnancy condition that occurs when the placenta grows too deeply into the uterine wall and Placenta Increta is when the placenta invades the muscles of the uterus. Typically, the placenta detaches from the uterine wall after childbirth, but with Placenta Accrete and Placenta Increta, part or all of the placenta remains attached. This can cause severe blood loss after delivery, other life-long medical issues, and in some cases, death. Carrie was told that even though her unborn child was doing well and thriving in her uterus, that she would not be able to carry her baby for longer than 34 weeks since the risk to her own life would greatly increase.
While isolated in the hospital, Carrie decided to make the best of the situation and pulled strength and knowledge from her leg surgery to get her through the experience. She covered every inch of her very small hospital room with positive quotes, ultrasound photos, artwork from her son, cards from friends and family and anything that made her smile. She threw herself into her sales career and dominated her sales quota in just a few weeks. She set a very strict daily schedule to stay busy, focused, and calm.
The birth of Carrie’s daughter was scheduled for March 6, 2018 and even though most of the medical staff felt Carrie would end up delivering earlier, Carrie knew that if she stayed focused and continued with her positive mindset that she could reach her goal and that is exactly what she did. Carrie delivered a beautiful baby girl, Tenley Evelynn during a scheduled surgery on March 6, 2018. As planned, Carrie needed to have a hysterectomy during delivery since that was the only way to remove her placenta. She did receive a blood transfusion due to the amount of bleeding during surgery, but she was alive and so was her daughter. Tenley stayed in the NICU for 18 days and on March 24th, Carrie, Jamie, Tristan, and Tenley were all finally under one roof.
Once home, most people thought Carrie’s challenges were over and the difficulties were all in the past. However, that was furthest from the truth. Carrie had been through such a highly charged traumatic experience that she ended up suffering from Post-Traumatic Stress Disorder (PTSD). PTSD is a mental health condition that's triggered by a terrifying event. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event. Carrie found herself extremely angry and full of anxiety about the entire experience and was easily triggered by seeing anything that reminded her of the trauma and fear of dying that she experienced for such an extended period of time. However, through weekly therapy sessions she started to heal. Carrie’s attributes her healing to a fairly new, nontraditional type of psychotherapy called Eye Movement Desensitization and Reprocessing (EMDR). Through this therapy, she was able to relive her trauma and reprocess it in order to heal. Tenley has recently turned two years old and Carrie not only feels like she is more than 90% healed from her trauma, but she is ready to share her story with the world. Carrie’s goal is to help others overcome life’s uninvited challenges and push on when there seems like there is no other option.
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