Cyara Jordan Jones

CYARA JORDAN JONES 

“MAMA STORY” 

Cyara Jordan Jones was born June 24, 2022, at 3:25 am at Woman’s Hospital in Baton Rouge, LA. She weighed 5lbs 13 oz. Upon entering this world and after being all cleaned up, nurses noticed something was wrong because Cyara had trouble taking a bottle. Cyara was taken to the NICU unit and stayed there for three weeks before being discharged. While in the NICU unit, several tests and blood draws were performed to see why Cyara had trouble taking a bottle. Out of all the tests and bloodwork drawn none of the results showed that Cyara had any form of heart trouble. Ultrasound’s done before she was born didn’t even pick up that she had heart trouble. Nurses and doctors concluded that we all would allow Cyara to grow and progress in her own time and keep her monitored. One night while in the NICU unit, I was holding Cyara rocking in a rocking chair and her beautiful big brown eyes shining up at me, the nick name “mama” came to me and I decided to call her “mama” When we got home, and I told my mom her nick name, she told me that was my great grandmother nick name also, mama. I had never heard that before. It was then that I knew Cyara would be strong and special.  

Two months after being discharged, (September 9, 2022), later we were referred to a pediatric heart doctor at Ochsner Medical Complex – The Grove. An echocardiogram and EKG were performed, and the results were shocking. I will never forget the look on the cardiologist and nurse’s face when they looked over the results and images. Cyara was immediately transferred to Ochsner Medical Center – New Orleans where she was admitted for 4 weeks. There she underwent so much for a two-month-old. Echocardiograms, EKGs, Cardiac Catheterization procedure, daily blood draws, breathing machine, oxygen, I can go on and on. After server tests, including genetics testing, Cyara was diagnosed with Left Coronary Artery Abnormality, a congenital heart disease believed to be related to Williams Syndrome. Every doctor, nurse, family, and friends I asked about William Syndrome had not heard of it before. After doing some research I learned that Cyara’s case of Williams Syndrome was the first ever recorded in South Louisiana, (I later met a family in North Louisiana with the same diagnosis, so now there are only two in the entire state of Louisiana). Cyara was prescribed three medications to control her heart function, which she had to take twice a day at the same time each day. One of her meds I could only get in New Orleans at a compound pharmacy. At the time of discharge, Cyara weighed 9lbs 11.2 oz. Cyara had deep, small, rolling veins so blood draws were very painful. Once discharged, we learned that she would need continuous weekly blood draws. It was a hit or miss for the phlebotomists and repeats were needed. Cyara traveled between Baton Rouge and New Orleans for weekly appointments. Cyara would be scheduled for heart surgery once she reached 21lbs.  

Flash forward, One May 1, 2023, and May 15, 2023, Cyara routine lab results showed an elevated level in her BUN/creatinine, and she was referred to a Nephrologist. One May 30,2023, Cyara is now 11 months old. That morning, we went into OLOL Children's for a routine lab appointment and to meet her Nephrologist. That afternoon, we got home and got settled. I received a call from her Endocrinologist and Nephrologist saying I needed to bring Cyara back to the lab because her results were abnormal and elevated. Her endocrinologist and nephrologist both informed me that her elevated BUN/creatinine levels were too high and if I have noticed any change in her since we got home. Like I told everyone (doctors, nurses, counselors, family, and friends) and will continue to tell everyone, if it were not for the test results showing something was wrong, I would not suspect a thing. Medical professionals would look at me confused and ask every time “Is this your first baby.” When they listened to my response and learned that Cyara is my fourth child and that I would know if something was off or different, but nothing was different with her but her weight. She was tiny (11-month-old and 14 lbs. 5.6 oz.), but Cyara acted like a normal baby at her age, laughing, smiling, playing with her toys, watching her favorite TV shows, answering to her name, etc. Prior to being admitted to Ochsner Medical Center – New Orleans, Cyara was scheduled to have an ultrasound of her kidney to see if everything was ok but had not gotten that ultrasound.  

We were admitted back to Ochsner Medical Center – New Orleans on May 31, 2023. After Cyara’s team of cardiologist’s met, they decided to have her evaluated for a heart transplant while in New Orleans in case surgery would not be possible. Being evaluated for a heart transplant required Cyara to be placed on several meds and several blood draws. She required a blood transfusion because with all the blood needed and with her size, she was running low. She underwent Echocardiograms, EKGs, Cardiac Catheterization procedure, MRIs, daily blood draws, breathing machine, oxygen, I can go on and on. The team in New Orleans learned that they were not equipped to undergo surgery for Cyara and called on cardiologists from around the world. I, Ochsner New Orleans, and moms of William Syndrome babies/kids from all over teamed up to see what could be done for Cyara. Doctors from Boston Children's Hospital, Kentucky, Texas, Stanford, and Alabama were all contacted to weigh in. While doing my continuous research I learned that there has only been ONE successful heart transplant in the US for a child diagnosed with Williams Syndrome and that was in Dallas, Texas. A heart transplant/heart surgery is scary alone, but when a child is also diagnosed with Williams Syndrome, it makes it a lot more difficult and riskier due to the anesthesia concerns. https://www.williams-syndrome.org/anesthesia. Due to insurance, it came down to Texas and Alabama would accept Cyara. Both hospitals requested additional images of Cyara’s heart to see what could be done. Both asked for a CT scan of her heart. I questioned over and over, “Why was a CT scan not done sooner?” Out of all the test ran, a CT was not one of them. The CT scan was performed on 6-20-2023. The paperwork and transfer process had begun to either Texas or Alabama. We will never know the outcome of these transfers. Only GOD knows. I questioned GOD, why did my baby girl have to go. GOD called Cyara home from all the pain and medical research and said that is enough. Cyara passed away 6-21-2023 around 3am. A scene that will forever be embedded in my mind. Seeing a team of nurses and doctors crowded around Cyara’s bedside performing CPR and later being advised that the CPR time was up, and they could not revive her. She was gone.  My mind could not process this, and it seemed unreal. Cyara touched the lives of so many. She was here on earth for only 11 months but left memories to last a lifetime. The morning Cyara passed, there was not one dry eye on the PICU floor. The doctors, nurses, counselors, technicians, and janitors all loved her personality and sense of humor. Everyone she encountered was immediately attached to her.  

All that Cyara went through, she was always a happy baby with no care in the world. She was my “mama”. Cyara passed just three days short of her 1st birthday. Today marks one year of her passing and it seems like yesterday she was here with us. Cyara will live forever in our hearts, never to be forgotten. We will celebrate her 2nd birthday with a balloon release at her grave site. Cyara will forever be remembered. I decided to tell her story in hopes it reaches other families with babies like Cyara. My message to you is, when you are getting your child routine checkups make sure the doctors are also requesting blood work to test the heart and kidney, because many times everything on the outside seems perfectly fine but without the proper blood results you may not know anything is wrong.  

https://unfilteredwithkiran.com/memorial-set-for-pointe-coupee-toddler-who-died-of-rare-condition/