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(CNN) — Before 13-year-old Jahi McMath went into a surgery meant to improve her quality of life, she had a terrible premonition.
"The worst thing about all of this is that Jahi told my sister, 'I don't want to get this surgery, something bad is going to happen. I'm not going to wake up,' " Jahi's uncle Omari Sealey told CNN in a phone interview Monday.
She went in to have her tonsils out. Now, Jahi is brain dead, her family says, and they are fighting to keep her on a ventilator.
Jahi suffered from pediatric obstructive sleep apnea, which caused severe snoring, stop-and-go breathing in her sleep, a lack of an attention span and urinating on herself.
"When you have obstructive sleep apnea, there is a cessation of breathing, so you are not getting enough oxygen to the brain. This can affect your energy levels, your attention span; you can grow poorly and have problems with obesity," said Dr. Lisa Thebner, a pediatrician whom CNN consulted for this story.
Jahi's mother, Nailah, and stepfather, Marvin Winkfield, had a sleep study done on Jahi and got two medical opinions on her case. Both times, doctors recommended a tonsillectomy to improve her condition.
"They said that she would have more energy, focus more, lose weight and the urinating would stop," Sealey said.
On the morning of Monday, December 9, Nailah and her mother, Sandy Chatman, took Jahi to Oakland Children's Hospital. Chatman, Jahi's grandmother, is a nurse in Kaiser Oakland's Surgery Department with more than 30 years of experience in the medical field. On that day, she took an active role in watching her granddaughter's progress.
"After the surgery, she (Jahi) was fine. She went into the recovery room. She was alert and talking, and she was asking for a Popsicle because she said her throat hurt. As part of the procedure, she was meant to spend the night in ICU," Sealey said. "When she got moved to ICU, there was a 30-minute wait until any family member could go see her. Upon entry, they saw that there was way too much blood."
Anytime you go into surgery, it is unusual to have these complications, but they are real despite the fact that they are low risk.
–Dr. Lisa Thebner
"She lost four pints of blood. She had to have four blood transfusions. She had two liters of blood pumped out of her lungs, not including what was in her stomach," Sealey said. "There was an enormous amount of blood, and we kept asking, 'Is this normal?' Some nurses said I don't know and some said yes. There was a lot of uncertainty and a lack of urgency."
Thebner says complications can arise during a tonsillectomy because the affected area has a lot of blood vessels.
"Anytime you go into surgery, it is unusual to have these complications, but they are real despite the fact that they are low risk," she said. "This was a highly unusual complication."
Back in the intensive care unit, Jahi quickly took a turn for the worse.
Sealey said that when Chatman noticed that her granddaughter's oxygen levels were dangerously low, she called for help.
Jahi went into cardiac arrest. The medical staff did chest compressions in an attempt to revive her and tried different medicines to clot her blood, but nothing seemed to work.
On Tuesday, a CT scan revealed that two-thirds of Jahi's brain was swollen.
"During the resuscitation, she lost a lot of oxygen to the brain, and now she was brain damaged. They (doctors) feared that it could progress and get worse, and it did. Now she is 100% brain damaged. Medically dead," Sealey said.
CNN could not independently confirm the medical facts and timeline provided by Sealey.
Children's Hospital & Research Center Oakland spokeswoman Melinda Krigel cited privacy laws when asked about the case.
A statement provided by Krigel and signed by the chief of pediatrics, Dr. David Durand, read: "Jahi's family has requested that we not share any details of her case with the media. We can say that, as whenever we see a medical or surgical complication, we are reviewing her case very closely. Our hearts go out to her family, and we want to support them during this extremely difficult time."
A sweet girl
Jahi was an eighth-grade student at E.C. Reems Academy of Technology and Arts.
Her uncle described her as "the sweetest more purest, innocent girl there was."
"She always smiled," Sealey said. "She would just smile and giggle. She had a personality everyone wanted to be around. She was your favorite person. She was a big sister and she had a little sister in kindergarten class, and every day, she would drop her off first before going to her classroom."
When told that his niece was brain dead, he said, the entire family went into "complete devastation."
"Shocking disbelief. We have never had to deal with a death of anyone close in our family, and we have a big family. I was in complete shock, my heart was racing as I was running down the hallways of the hospital," Sealey said.
He said that by Thursday, December 12, Jahi was declared medically dead. Additional testing confirmed the tragic news on Friday, December 13.
All along, Jahi's family has been by her side.
"We pray over her daily. We kiss her. I charge her iPod and make sure it is in her ears every night when I sleep next to her," Sealey said.
But on Monday, Jahi's family realized they would be forced to say goodbye.
"On Monday, we had to come to grips that she is legally dead and we do not have the option to say we want her to stay on the ventilator and on life support. The coroner is coming for Jahai," Sealey said.
An official from the Oakland coroner's office told CNN that Jahi's death was reported to the office Thursday.
"Once a death is reported to us, we have a duty and responsibility to immediately proceed to where the body lies, examine the body, make identification, make inquiry into the circumstances, manner, and means of death, and, as circumstances warrant, either order its removal for further investigation or disposition, or release the body to the next of kin," the official said, quoting California Government Code Section 27491.
Sealey said his family hoped Jahi could be kept on life support, but hospital representatives told them Monday that would not be an option.
- A sleep disorder that occurs when child's breathing becomes partially or completely blocked repeatedly as child sleeps
- Caused by blockage of the upper airway during sleep
- Usually differs from adult sleep apnea in several ways
- Problems with daytime behavior and attention span are usually seen
According to the coroner official, "in this case, this office has been very gracious. Technically, we can go where the body lies and we can begin our investigation as to the causes of death. We have been gracious and we have allowed the parents and the hospital to maintain the child on life support."
Krigel, the hospital spokeswoman, said in an e-mail that the hospital does "not have a policy re: terminating life support. We work with the family to determine when that will happen. There are instances when the coroner may request termination, but we always work with the family to respect their wishes."
The official at the coroner's office said the main concern is giving the family the answers they seek, and in order to do that, time is of the essence.
"The larger issue is that when the body is on a ventilator, the body is healing," the official said. "If a medical misadventure occurred, and the body is healing and covering up traces of that misadventure, the coroner pathologist has a more difficult time rendering a cause of death."
"In my opinion, that is the bigger issue we are grappling with here: the balance between giving the parents time to grieve and determining the causes of the child's death before the body heals."
"This child is deceased. From a medical standpoint, this child will never recover. There is a careful balance between letting the parties investigate and allowing the parents to grieve," the official said. "We know the parents want answers, and it is our office that will provide answers if they are available to us. The longer we wait, the less susceptible we are to getting the evidence we need to render a cause of death. Time is not on our side, from a medical investigation standpoint."
But the family has hope.
"We are fully aware that the longer that we wait, any type of evidence can be lost, but my sister has faith that her baby can wake up more than anything else," Sealey said. "She believes that against all odds, against what every doctor has said, yes, she believes."
Sealey confirmed the coroner is scheduled to come for Jahi's body Tuesday but said his family is prepared to fight.
"We are trying to do what we can, every last little bit of fighting, to keep them from doing this," he said.
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