Rayden’s mom battling anger, sadness at his death

Nadine Davis, whose 3-year-old son, Rayden Davis, died after a protracted illness that galvanised the nation, says she has been either angry or sad since he died last Wednesday.

“I am angry most of the time and when I am not angry, I am sad because I am saying most of those things (tests), they were taking weeks to get back the results. All of those things could have been expedited,” the 27-year-old Richland Park resident told iWitness News on Sunday.

“Sometimes, I don’t want to sleep — I can’t sleep home,” she said, adding that she avoids going home.

“The couple days that we went out, I don’t want to come home. Whenever we went to town to arrange whatever we had to arrange for the funeral, I would want to stay out,” said the mother, who, along with Rayden’s father, Randy Thomas, has lost her only child.

“I would like to stop here or there and when I come home, I can’t stay in the house. I can’t stay in my room. I sleep with my mom. The only thing I have gone into the room to do is to grab clothes and put on.

“Because how could I go in my room? There’s Rayden’s clothes for school. He was to start school September gone; his clothes are right there. His shoes are right there,” the mother said.

“The suitcase we packed to go away is right there. I can’t sleep. Every time I step in the house I cry because something around the house reminds me of him. The teddy bear is there. Mom took a photo of him and has it in the living room in a frame on the centre table,” she told iWitness News.

“So, everything reminds me of him and it hurts. Most of the time, I don’t want visitors. Everybody wants to come and speak and when somebody comes and speaks, I break down more.”

Davis told iWitness News that her son’s medical issues began on June 29, 2022 when she realised that he was not feeling well and was not having bowel movements.

 She took him to a doctor at a private clinic and that doctor referred Rayden to the Milton Cato Memorial Hospital (MCMH) where he was admitted for one month.

MCMH concluded that Rayden had an infection in his blood but mainly that he had sickle cell, the mother told iWitness News.

“He was full blown. He stopped walking and was in bed for a while. He never walked from then,” Davis told iWitness News.

She said that when Rayden was discharged, the hospital told her that there was no medical reason why he was not walking and speculated that it would be because he had been in bed for so long.

The child was referred to and was receiving physiotherapy at the Levi Latham Health Centre in Mesopotamia and also from a private practitioner.

“He was not improving. He was walking on his hands and knees, like he came back like a baby,” Davis said.

She said that sometime later, the child was not feeling well again and was pale, so she took him back to the private clinic, which again referred him to MCMH, where he was warded for two more weeks.

“They said he had an infection and his blood was low and he had to get a transfusion. It had fallen to four or five,” she said of his blood count.

Davis told iWitness News that they left MCMH but the hospital called her and told her to bring the child back immediately as he was anaemic and his blood level was low.

She said he was discharged but again developed bowel issues and was referred to the hospital again on Oct. 24.

“… and we never came back from there,” she said, adding that during Rayden’s hospitalisation, “everything was getting worse.

“He had to get a lot of blood transfusions and his platelet count was not improving. He was on the ward for two weeks but wasn’t receiving any IV or anything because his platelet count was still low,” Davis said.

She told iWitness News that the child was administered suppository and enema in an attempt to address his bowel issue.

“One day at the hospital, in November he collapsed. They said he might have had a seizure. That was the day on which he was to do a bone marrow,” she said.

“They did a CT scan and they said his organs were enlarged, his spleen and his liver, and that he did not look good. They said he caught an infection on the ward and he was moved to a private room,” the mother said.

“And after that was just test after test, sending away tests, transfusions.”

Davis told iWitness News that during that time, she and Rayden’s dad, who was in Canada, were each in contact with a hospital.

“We were doing it privately,” she said, adding that the father was in contact with a hospital in England and she with one in Trinidad.

“We wanted him to be transported to another hospital to try to figure out what was wrong with him because they could not figure it out. It was just test after test. Sometimes, every two days, they draw blood from him. The only thing they could figure out was his blood low, platelets low, potassium, white blood cells. That was the only thing because those tests were dropping like way often. So, they said those were indications that he had cancer, that’s why they wanted to do the bone marrow test.”

Rayden tested negative for leukaemia, Davis said, adding that his father asked a doctor at the hospital if they would send the children elsewhere for help and was told yes.

She said the doctor, however, said that Trinidad is not accepting any patients because the hospital had tried very hard with another patient and they did not accept.

“We took weeks to get those medical records. They had to provide one for me to send, address it to King’s Hospital (in England) and one for Trinidad. It took me like three weeks to get the one for England and four weeks for the one for Trinidad.”

She said that when she was told, finally, that the records were ready, Rayden’s aunt went to collect them from MCMH and they told her they could not find them, saying the person who had prepared them had left already and the person who was on duty could not find it.

“They were supposed to send it to the CMO (chief medical officer) but it was taking so long so she (Rayden’s aunt) went for it herself. When they finally found it, they said it was under a worker’s keyboard,” she said.

Davis told iWitness News that the hospital in England responded to her email and requested 300 pounds to consult with the doctors in St. Vincent.

“I never went forward with it because they had discouraged me. It’s like, ‘You might pay 300 pounds and they didn’t accept. That is a waste of money’,” Davis told iWitness News of her alleged conversation with hospital staff.

She noted that 300 pounds is about EC$1,000.

“After the email, I never contacted them. It is after he go viral, after the (Facebook) live, a guy that was working at King’s Hospital contacted there and paid the 300 pounds.”

Davis was referring to the Facebook live videos she did on Jan. 14, that galvanised the nation behind her case.

She said the money for the consultation was paid for the day before her son died and the consultation never took place.

Seeking gov’t assistance

Davis told iWitness News of her attempts to secure assistance from the government.

She said the first person she contacted was her Member of Parliament, Jimmy Prince, who is also minister of health.

Davis said she spoke with Prince via cellular phone in November.

“He was in the loop about everything. He knew because he visited us twice at the hospital. … After I told him about the situation, he said when Trinidad accepts him, we will tell him the cost, he will mention it in the Cabinet and we will go from there. He was willing to help out the situation,” Davis told iWitness News.

She said that in November, after she saw Rayden was not getting better, she went to the Finance Complex to visit the Office of the Prime Minister.

She said she was wearing a sleeveless top and the auxiliary police officer on duty told her she could not go to the Prime Minister’s Office dressed that way.

“I told him I had something in my bag to throw over,” Davis told iWitness News.
She said the auxiliary officer asked her what she was going for.

“I explained it to her. She asked if I went to the Ministry of Health and she gave me a number and told me to call one of them.”

Davis said she called the number and reached one of the prime minister’s secretaries.

“I was explaining to her. She still asking me if I went to the Ministry of Health because that is the proper channel. She was asking if a hospital accepted him, I said no. She said, well if you want the prime minister’s help you have to get a hospital to accept him and then the PM will help.”

Davis said she never got the appointment to see the prime minister.

“I was on the phone there crying. I asked her, ‘So I can’t get an appointment to see the prime minister? She said, ‘I never said you can’t get an appointment to see the prime minister but you have to have a reason why you are coming to the prime minister.’ And I never got the appointment.

“That was in November. He wasn’t down like he was in the last minutes, when everybody trying to get on it,” Davis said.

She told iWitness News that Rayden’s situation was  getting worse, and he had “one or two” seizures.

By this time, they had emailed everything to the hospital in Trinidad, where a nurse who was acting on the child’s father’s behalf.

“The process is CMO to CMO — they had to send off the medical records to there. They were getting the medical records.

The hospital in Trinidad said he had to get a diagnosis for them to take him. But they at the hospital (MCMH), they couldn’t figure it out. They couldn’t get a diagnosis,” she said. 

Davis told iWitness News that in early January, MCMH was saying that Rayden had Hemophagocytic lymphohistiocytosis (HLH) — a rare but potentially fatal condition in which certain white blood cells (histiocytes and lymphocytes) build up in and damage organs, including the bone marrow, liver, and spleen, and destroy other blood cells.

Amidst uncertainty, mom reject chemotherapy for Rayden

The mother said that in early January, the doctors had a meeting to discuss the situation “because it seemed that they could not figure out what was going on.

“They said they had emailed everything to Trinidad but said they wanted to start him on chemotherapy on the Monday. They said they were not one hundred per cent sure that it was HLH.

“I was saying, ‘If you are not sure it is that, why start chemotherapy?’”

She said that after the meeting, one of the doctors told her Trinidad had contacted them and she should keep her fingers crossed because it sounds promising.

“After, she came back and said they had accepted the child,” Davis said, adding that a social worker told her that she and Rayden will travel to Trinidad “on the weekend” of Jan. 7-8.

“She asked if I had money to help me out down there. They said Rayden was going as a public patient. They said they had chartered the flight and a doctor would be going with him. They didn’t say when they would go but it would be by the weekend,” Davis told iWitness News.

Davis said she took her suitcase to the hospital.

Then, on Sunday, Jan. 8, she asked the doctor if they were not travelling to Trinidad. The doctor said yes, but Trinidad wanted to see something from the result of the bone marrow test that had been sent to The Hospital for Sick Children (SickKids) in Canada but she (the doctor) was not sure what the doctor in Trinidad was looking for.

“The doctor in Trinidad said when he got the result from Sick Kids in Canada, he would transfer Rayden to Trinidad. The doctor (at MCMH) said she wanted him to go by the Sunday before he gets more ill,” Davis told iWitness News.

However, on Monday, Jan. 9, Rayden was still in hospital and her mother had not heard anything further about him travelling to Trinidad. Then Tuesday, nothing.

“Then on Wednesday, Jan. 11, the doctor came and said, ‘I see the suitcase but I have bad news.’

“She said they have to have a meeting with all the doctors and it is no longer a simple case. It is now worldwide; they were trying to figure out what to do. And at that point, I knew that he was no longer going to Trinidad.”

She said that there had been a meeting and Trinidad had decided not to accept Rayden as a patient.

“They said if they send him, they would not know what to do with him, how to treat him because he was not 100 per cent sure if it is HLH that he has.”

Davis said that during that week, her son got progressively worse.

“He was in pain a lot. A lot of transfusions.”

Social media galvanised

She said that on Jan. 14, the day that she did the live video, she had gone to sleep with a headache around 4 a.m., after staying up all night with the child.

“… and after 5, I heard a nurse come in and say, ‘How this happening?’ When I came out, the child was drenching in blood — the sheet, the tablet, everything was in blood,” Davis said, adding that Rayden’s IV line had come loose.

“The morning, the doctor passed and I told him about it, they said they would report him. The nurse came in and he said the mother went to sleep and left the child to bleed out.

“That’s when it triggered me and that’s when I went live to talk about it. I was saying I was there so long with the child, why would I leave him there to bleed. That’s when it went viral and everyone was trying to help.”

The mother said that her son continued to deteriorate and received five blood transfusions in five days.

On Jan. 14, Rayden started to bleed from his nostrils. He received blood transfusions on Jan. 14, 15, 16, and 17 and was scheduled for another on Jan. 18, when he died.

Davis said that Rayden’s father, who had returned from Canada to help care for him, was present when he died and she was just walking back into the room, having gone to another section of the hospital to check her blood pressure.

The death certificate said the direct cause of death was fungemia — the presence of fungi or yeasts in the blood. The antecedent cause was congenital immune deficiency, and the other significant condition was HLH.

His funeral arrangements have not been finalised.