Ja'Nyse's Medical Story

Ja'Nyse Reanell Richard was born on November 20th, 2002 at 36 weeks gestation. She was Twin B to her brother born ‘normal' by society's definition. Ja'Nyse weighed 5lbs. 2 oz. with her length at 19 ½ inches. 

At the moment God blessed our lives with the twin's birth, no doctor, family member, or closest confidants could have prepared our family for the journey we were all about to take or teach us about the miraculous resilience Ja'Nyse would showcase in the coming years. 

Simply stated, Ja'Nyse has a complicated medical history. She was a full-term twin born with severe congenital heart disease, Di George Syndrome, and six digits on each hand. 

Ja'Nyse would subsequently also be diagnosed with additional medical issues in the coming years, which included: Interrupted Aortic Arch, Ventricular Septal Defect, Atrial Septal Defect, and Adrenal Insufficiency. Janyse would be required to be seen by multiple subspecialists, including Cardiologists, Pulmonologists, Ear Nose and Throat practitioners, Immunologists, Endocrinologists, Genetic Specialists, and Critical Care Complexologists.

Ja'Nyse was critically ill on the first day of her life. On the second day of her life, she required open-heart surgery. During this open-heart procedure, it was discovered that she would later need additional surgery to repair a leaking Aortic valve. 

This would be the first of several cardiac surgeries she had to endure. At age 2 months, Ja'Nyse was being prepped for another cardiac surgery and it was discovered that her breathing airways were too narrow (stenosis), which meant the doctors could not intubate her to successfully put her under anesthesia for the surgery. 

It was then determined on February 23, 2003, that Ja'Nyse was required to have a tracheostomy (a surgical hole in her throat leading to her airway) and was placed on a ventilator continuously to help her breathe. The ventilator was required to ensure Ja'Nyse had maximum support in getting adequate oxygen to her vital organs, particularly her heart and brain. At age 4 months she was able to have the Aortic valve repaired successfully. 

As Ja'Nyse grew stronger day by day in the hospital, we knew God was in control, and we had to keep the faith that everything was going to work out in the end. 

On March 27, 2003, after 4 months and 7 days, Ja'Nyse was finally medically stable to be discharged from Texas Children's Hospital and come home. Ja'Nyse was transported to our home via ambulance due to all of the medical devices required to sustain her life at home. 

We did not realize in those moments our home would be converted to a mini critical care unit to support Ja'Nyse in every way. Ja'Nyse arrived home with her tracheostomy, ventilator, oxygen, and oxygen monitor still all in place and very much in use for the full 24 hours daily. Upon arrival, we were also greeted by private duty nursing services that would continue to support Janyse and our family over the next year and a half. 

The nurses would come to our home 12 hours per day to teach us how to provide all aspects of Ja'Nyse's care. The nurses helped to identify resources, not only for Ja'Nyse but for our family. The nurses educated us on how to change her tracheostomy tube every month, how to suction her tracheostomy in order to keep her airways clear, how to administer the multitude of medications she was still required to take, and most importantly how to quickly identify when Ja'Nyse was in distress to help her remain at home and not go back to the hospital.

Over the next 2 years since Ja'Nyse was able to come home, she battled through several episodes of pneumonia. Ja'Nyse was able to successfully have surgery to remove her extra digits on each hand. Ja'Nyse required services from Physical, Speech, and Occupational therapists to ensure she fully functioned at optimal capacity in all areas of growth and development. 

Ja'Nyse was able to receive support services through Early Childhood Intervention (ECI) to help with developmental delays. Despite the numerous evident challenges, Ja'Nyse remained a warrior. Ja'Nyse was a very determined child who wanted to do the very same things her brother did and tried to do so every chance she could get. She loved to eat and dance from the moment she was born. Her smile is and has always been infectious. Ja'Nyse is a very kind, generous, respectful, and inquisitive young lady.

In May 2005, Ja'Nyse had a miraculous milestone event. She was able to be successfully de-cannulated. This meant she was able to fully breathe on her own and was able to have the tracheostomy tube removed. At this point, Ja'Nyse was thriving and flourishing beyond what we could describe through words. 

Although she would require more ongoing support from Speech and Occupational therapists, her spirit and tenacity remain steadfast. Due to her overall genetic syndrome, and the medical complexities that dominated the first year of her life, Ja'Nyse will continue to work on overcoming long-term learning disabilities. Most importantly, Ja'Nyse is overcoming every one of the challenges that life has thrown her way, and is doing so daily even now.