Tahj Akeem Cooke
Born to Brandy Hatfield and CeCe Cooke on November 1st, 2001
Died in his mommy's arms, with his daddy next to him with tears rolling down his cheeks, surrounded by so many of those who loved him, on April 27th, 2003.
This is very painful for me to do, but I feel like Tahj deserves this. His Mommy was going to do it until she was brutally taken from us, and joined Tahj, just 3 1/ 2 weeks after he died. So it is left to me, mom and grandmother, to tell the stories.
He was Brandy's 4th child, and the other three are very healthy. Tahj looked healthy too, at first. He went for a 2 week check up and Dr. Altar said "There is something wrong, he doesn't have any muscle tone--he seems like a floppy baby." She told her to bring him back in 3 weeks, and if he hadn't improved she would send him to a neurologist. Brandy called me in a panic and said "Mom, there is something wrong with Tahj!!" The 3rd week he went back to Dr. Allitar she said, "He is the same, he needs to be seen by someone else." Brandy said "Can I take him to Charlottesville, VA?" ( It is about 4 hours from here). So Brandy, I and CeCe, Tahj's daddy, all took him. I was so terrified, but I never thought I would get the news they gave us.
One doctor took us in a room and flopped his arms and legs and said "I would like to admit him and do some tests on him." This was 3 days before Christmas and he was only 6 weeks old. When being diagnosed, that is very young.
Later on that night, three doctors came into our room and said "The test came back. Let's go somewhere and talk." We all sat down, and the doctor said to my daughter, "Do you know what is wrong with your baby?" and she said "No." He said "He has a genetic disease called Spinal Muscular Atrophy", and they all just sat there with teary eyes. When we asked what it is, they explained it to us. (You can get a good explanation of what SMA is by going to www.fsma.org or www.smasupport.com). I said "What can be done for it, how do you treat it?" and he said "There is nothing to do, there is no cure. It is fatal." Tahj's mommy screamed out, crying "Not my baby, not my baby!" I didn't know what to say or do except hold her to try and give her some comfort. The doctors were so kind and considerate. They just sat there and looked as devastated as we did. We all left the room, and she and I just stopped in the hallway and stood there for a while holding each other. Tahj's Daddy had gone to the motel for a while, so Brandy called him to come so she could tell him what was wrong.
It was one of the worst days of my life and I thought nothing worse could ever happen. But it can, and we all are still going through so much pain.
We stayed the night at the hospital, and we cried and cried, and I thought he was an angel sent for a short time. We came home and the next day was Christmas Eve. We all are a very close family. My sisters, brother, nieces, nephews and friends just sat around and stared at him, hoping we would have baby Tahj forever. But the Lord doesn't promise us anything--we are not promised tomorrow.
There was something so very very special about baby Tahj. He had huge brown eyes, and was such a happy baby. All the doctors and nurses loved him very much.
They only gave him 3 to 6 months to live. His mommy took such good care of him, and so did his nurses that would come to the home. His doctor took a special interest in him. Tahj was the first patient she'd ever had with SMA, and she said that during her training she had only seen one baby with it. We had the SMA information printed out, and the first time he went to the hospital here they had never heard of it, so Brandy let them read the information sheet Charlottesville gave her. Towards the end Brandy always said, I have researched the internet and found a doctor in New York who is supposed to be the greatest. After he got his trachea she regretted that, because she heard of a cough machine that could be used.
His pediatrician did everything she could do here. The first 4 times we went to UVA, the doctors would take us in a room and say "Do you understand what your baby is going through, and some choices you are going to have to make?" They wanted Brandy to tell them what to do when it came time to put him on a ventilator. One doctor said I have a patient who is 9 Yrs old and all he can do is sit in his kid cart. Brandy finally made it clear to the doctors she would do everything in her power to keep him alive and keep him living as long as possible.
After he was put on the ventilator and had all of his equipment at his home, Dr. Al-attar started admitting him to our local hospital. The hospital didn't have an ICU for children. Brandy always stayed with him and knew how to care for him. All of the staff including housekeeping, just loved Tahj.
When he died, I called the hospital to have his Dr. paged and they said he was released a couple of days ago. They just didn't understand. His Doctor knew he was so sweet and had such big, beautiful brown eyes and a tremendous smile.
One of the last times Tahj was in the local hospital his heart rate was going up very, very high and he was flown to UVA. I was going to go to UVA the next morning and Brandy called and said" don't come, they are letting him come home." Once he got so bad they would transport him home in an ambulance. Brandy said "they didn't do one test on him." It was like they knew he didn't have much time left.
Tahj came home for a couple of days and was right back in the hospital. Brandy and Dr Al-attar discussed it and she wasn't going to send him back to UVA. He was in the hospital for a week and came home on Sunday. On Friday morning at 6:45am I picked up the phone and Brandy was screaming "its Tahj, its Tahj" he isn't breathing. I said call 911. She said " They are on the way." I can still hear her screaming on the phone. I couldn't understand her very well and I was still in my pajamas and just left the house to see if I could help in any way.
At the hospital a paramedic was sitting on the ambulance and was crying his eyes out. I said "where is Tahj Cooke" and he pointed to the ER. I was shaking and hysterical. I asked the lady at the desk "where is his family?" She said they were in the family room. I saw my daughter, his morning nurse and my sister all crying and I asked Brandy where he was and she said "they are working on him." Brandy said "I didn't have a nurse and I fell asleep and woke up and heard the alarms." She was crying so hard and screaming, it was terrible. I was hoping it was not time, not yet. Awhile later a doctor came in and said "we have him stable". I was so happy and relieved not knowing what may happen next.
We went in to visit him 2 at a time, he didn't look good and they said he was not aware of what was going on. They had a tube hooked up to him to drain blood and it was coming out fast. They said "we are going to have to fly him to the nearest hospital and he may not make it.
It will be the will of God. It was the first time Brandy was not allowed to fly with him. Before they left the doctor said "If we lose him on the way, what do you want us to do?" Brandy said "Try to keep him alive until I get there."
It took us an hour and a half to get there. We went in to see Tahj and he looked awful. They said "he was in a coma". He had burn marks on his chest from the shock treatments he had at the other hospital.
Young babies are so fragile, that is what made him bleed internally. He started bleeding from the brain and he had a horrible round sore on the back of his head with puss and blood oozing out. Tahj looked worse and worse by the hour. At the very end he was getting swollen and he had blotches all over him. He looked like he was really suffering. He had brain damage because he went about 20 minutes without breathing.
They talked to Brandy and told her she needed to make a decision. Hours went by and all of Tahj's family and friends were there. Brandy was in such agony she could not stand and fell to the floor in the bathroom to vomit. She said "let's all go to the chapel and say a prayer". The doctor said Tahj would not make it through the night. Brandy called his favorite nurse and told her to come.
At 11PM Brandy told the doctor that she was going to let him go. We all went in to his room and Brandy sat in a rocker and the nurse put Tahj in her lap. Brandy took him off all of his medicines and the ventilator. Brandy held him and rocked him like she always had done. Her head on his with tears rolling down her cheeks the time was near. When Barb, his favorite nurse arrived, Brandy said "I am ready".
The doctor came in and turned the ventilator off and Tahj took his last breath 1 or 2 minutes later. He died at 1:14am Sunday morning. Tahj weighed 36 pounds and was 3 feet tall. (A Big Boy)
It was so sad, I didn't want to let my baby go, but the Lord needed another Angel.
I wanted to pick Brandy up and rock her like I did when she was a baby. I was so helpless.
They cleaned him up and we went in to see him and he looked so peaceful. He didn't have one mark on him and all of the swelling was gone. He looked so cute and peaceful.
None of us ever noticed before, but he looked exactly like his 5 yr old brother, Taymon. It was amazing and the first time we saw him with his mouth shut. Tahj is up in Heaven running around playing, laughing and talking. I can see his mommy still rocking him, but in a peaceful way. WE MISS THEM SO MUCH!