Kyomis Gift

The Story of an Angel

A miracle found its way to us and an angel touched our lives on September 10, 2004. Kyomi Linai Culpepper at 9lbs 6oz was born just after midnight and every person privileged enough to be present was elated. She was born with a head covered in long silken locks with gentle curly eye lashes so long that they seemed to wave to you when she blinked and looked up at you. It was the first time in her parents’ lives that they truly and whole heartedly felt bliss. The moment was short lived when Kyomi was taken away from her mom and dad and had to be placed in an oxygen hood due to the low level in her blood.

Still optimistic and overjoyed her mom and dad made preparations for her homecoming. Kyomi was showered with gifts that she wouldn’t be able to enjoy with her family. The day of the families scheduled departure from the hospital the results of a final blood test came back. There was an abnormality with her kidneys. Only hours before they were scheduled to go home the doctor informed them that Kyomi would have to be admitted to the Neonatal Intensive Care Unit. The doctors conducted every test at there disposal but still could not find an explanation as to the cause of the little angel’s affliction.

At the request of a kidney specialist, she was transferred to the Devos Childrens Hospital after 10 days in the Neonatal Intensive Care Unit at St. Mary’s. It was determined that Kyomi was born with Autosomal Recessive Polycystic Kidney Disease. This is a condition in which cysts form within the kidneys and will shut down the function of the kidneys. Kyomi would have to have a kidney transplant in order to survive, but she was too small to undertake such a massive surgery. The physicians then decided to put the precious child on dialysis until she was able to receive a transplant. Kyomi underwent her first surgery at 2 weeks old. She had a feeding tube and dialysis port put into her tiny abdomen and a broviac line inserted into her chest. This was all performed in her first surgery. With the heart of a warrior she bounced back from the surgery. Kyomi and her parents literally lived in the hospital with the hope that she would be able to make it to transplant weight and age.

Soon after her surgery, her dialysis port started to leak and Kyomi had to go back into surgery to have the port removed so infection wouldn’t set in. After her surgery the doctor’s decided to keep her off of dialysis. They continued to test her blood and her levels started to improve. Kyomi’s family and the staff were hopeful that she wouldn’t have to go back on dialysis. It was then determined that she was healthy enough to be discharged and the family was able to take their little angel home. Only three days later, Kyomi had a doctor’s visit and her blood work showed her condition to be deteriorating. She had to be readmitted to the hospital. Kyomi then underwent her second big surgery and had her dialysis port put back in.

Deterred but still optimistic Kyomi’s family went on caring for her, supporting her, and standing by her side. Kyomi was never left alone; there was family with her at all times. Her parents slept in shifts so that someone would always be awake with her. This schedule persisted for months and in the coarse of this time Kyomi’s parents were trained to not only administer her medications and shots but even how to operate her dialysis themselves.

Finally, Kyomi was again stable and her parents being trained in her care were allowed to take her home. The visit at home only lasted nine days before she again had to be readmitted. After being readmitted into the hospital, Kyomi started to have seizures. The following morning they scheduled another surgery to have a tube inserted into her head. This would drain the fluids and release the pressure that was causing her seizures. The doctor explained that there was a chance that she may not make it through the surgery. Kyomi’s parents and grandmother waited anxiously in the waiting room. After a long wait, the doctor came to them and told them that the surgery went well. The strong baby girl had once again proved to everyone that she was not only determined but she was a fighter.

Late one night things went horribly astray when her heart rate started to drop and Kyomi went into a cardiac arrest. A rush of doctors and nurses performed emergency surgery and were able to get her stable. The doctors gave her only hours to live and if she lived longer than that she may have brain damage. With Kyomi’s unyielding spirit she fought through it. Every day after that night the doctors would come in and tell the family that she had little time left and every day she proved them wrong.

The family continued to stand by her side and play her music, read her books, and tell her stories. Kyomi continued to hold their fingers with her little hands as they were unable to hold her due to all of the machines she was hooked up to. For several weeks this went on and Kyomi continued to defy the doctor’s predictions until she finally succumbed to multiple organ system failure, sepsis, and kidney failure. She valiantly clung to life until her condition was such that the doctors had to inform the family that she would only suffer from here if allowed to go on. So the family was forced to allow the machines to be turned off and watch as their precious angel slipped away. On January 7, 2005, Kyomi Linai Culpepper and her family lost a valiant fight. Though her life was short she filled all those blessed enough to know her with strength and hope. The family holds Kyomi in their hearts, dreams, and prayers forever and they will continue to find comfort in the fact that she will be a part of them forever.