Who is this beautiful angel? She is most definitely an angel that I am truly excited to tell the world about. This is a dedication to Leigh Ann from Kentucky.
Leigh Ann was born an only child via c-section on April 19, 1990. She weighed 9lbs and was 20 inches long. Leigh Ann was born a healthy, happy child with an amazing shine in her eyes. At around he age of 1 1/2 years old (January 1992) Leigh Ann began to show signs of Hypothalamic Dysfunction and rapid weight gain. In October 1992, she experienced her first Cardiorespiratory Arrest and at this time she had full blown UNDIAGNOSED ROHHAD. Leigh Ann stopped breathing while at day care and at the hospital she went in to code-blue.
Between birth and 1992 doctors failed to recognize any symptoms that her mom was telling them. Diagnosis: too much food.
In 1992, ROHHAD was not known at all. Doctors blamed her breathing problems on obesity and obstructive sleep apnea - they never checked for central Hypoventilation. Because nothing was known she went without proper breathing treatment for over a year. Leigh Ann's endocrinologist and pulmonologist did mention Hypothalamic Dysfunction but since her MRI of the brain was normal they dismissed this. Even though Leigh Ann had abnormal endocrine results - passed off as medication related.
Leigh Ann spent 3 weeks in the hospital when finally being discharged with: Medical problems caused by home environment. Diet should be 1,200 calories max a day. Her mom fed her less than 1,200 a day and she was STILL gaining weight.
November 1992, she was again air lifted to a hospital, this time Indiana, for respiratory problems. She spent 9 days in the hospital with the doctors repeating what the hospital said in Kentucky. They left with a C-PAP and oxygen for her to use to breathe.
Leigh Ann's parents were told to be patient that at some point a tumor should pop up on the MRI and then doctors will know what to do. THIS NEVER HAPPENED. All MRI's were still normal.
January 1993, Leigh Ann went in for a sleep study. At this time they were told she needed to have a Tracheotomy and the surgery was performed. Diagnosing Leigh Ann with Hypothalamic Dysfunction....but they said "There is something missing. Something we don't understand in ther sleep study results".
Still nothing known or mentioned about Central Hypoventilation or Central Apnea. But doctors said if Leigh Ann could lose weight she would be all better --- the parents kept trying.
By November 1993, the hospital in Indiana finally finds the Central Hypoventilation syndrome while being treated for Pneumonia. When Leigh Ann was finally diagnosed, she had undergone so much trauma and the delay of treatment caused further brain damage and neurological deficits.
November 1993 until February 1994 Leigh Ann remained in the hospital before being transferred to a neurological rehab hospital in Michigan.
April 1994, Leigh Ann returns back home from the Michigan hospital. By this time Leigh Ann had stopped growing. With her mom no longer working and dad always at work everything was extremely stressful and Leigh Ann needed everything they could give.
Leigh Ann began to have frequent seizures lasting 45 minutes at a time due to sodium levels being too high. Her Cortisol levels became a major issue during anesthesia, she had Tertiary Hypothyroidism #3 and elevated Prolactin levels. They battled this for YEARS!
In November 1997 she underwent Fundoplication surgery for vomiting. Leigh Ann had low body temperatures and spent time in the hospital for hypothermia, her behavior changes were drastic and made it difficult for her to stay connected to her ventilator.
Leigh Ann - 6 Years Old
Leigh Ann 7 1/2 Years Old
Leigh Ann was 40 inches tall and almost 8 years old when she passed away on February 19, 1998. At the time of her death she was finally diagnosed with Late-Onset Central Hypoventilation Syndrome/Hypothalamic Dysfunction --- now known as ROHHAD.
I have read Leigh Ann's story over and over. Her mom wrote to me in January - right before Haven's 5th birthday. I have cried and cried over this letter and the pictures are just beautiful.
Leigh Ann - I know you are up there. You are our Angel In The Sky and you are in our hearts. You were the first of us to have ROHHAD and I know you are watching our children and helping to guide us. We miss you terribly. I want you to know - everything you and your parents went through is not lost.....We are hearing your story and you are helping us teach doctors and people about ROHHAD.
All our love to you and all my love to your mom and dad. Take care and sweet kisses!
I hope to soon get Nikki's complete ROHHAD story and will share it with all of you. Above is a picture of Nikki and her mom, Karen. Thank you so much for sending your photo to us!