Baby’s spinal cord healed.

I made a promise to God that I would share the miracle of my youngest son with other people. This was 3 years ago. I never forgot my promise, I just wanted to be able to tell the long term outcome. This is my family’s story and how God worked in our lives.

My husband’s sister was killed in an accident about 5 years ago. She was married to an abusive alcoholic and had 2 small little boys at the time of her death. As though the death wasn’t painful enough, the 2 small children were being abused by their father. We prayed and prayed for their protection and safety for over a year. My sister in law had left a great deal of money in life insurance to the boys in a trust fund. She had locked the insurance documents up in a desk drawer where she worked and nobody knew about them. It was like she knew she was going to die and did not want her husband to have the money. This did not go well with him. He harassed and tortured our family for over a year. He then assaulted and almost killed another woman and was sent to prison. My in-laws got custody of the boys and it seemed like maybe our lives could settle down.

I decided to quit work and be a full time stay at home mom and help with my two nephews. I was very happy about this decision and looking forward to the future for the first time since my sister in law’s death. One month later, I discovered I was pregnant with my third child. We were not supposed to be able to have any more children and I was not happy about the pregnancy at first. To make it worse, I spent the next 7 months lying in bed, so sick I could not raise my head up. My first two pregnancies had been fine with no problems, but this was miserable. Jeb was born January 22, 1997 at 9:00 in the morning. The doctor wrapped him up and handed him to me and I held him for a minute before the nurse took him to do his checks. I saw the look on her face even though she tried to hide it. She called the doctor over and standing there watching them look at my son, I thought I might pass out. I finally asked what was wrong. The doctor said that Jeb had a protrusion on his back called a mengiocele. It was very small and the ultrasounds must have missed it. The doctor told us that he was moving his legs good and he thought he would be okay, but he would call a specialist just in case. The nurse left with the baby and told us she would be back with him in about an hour. My husband was oblivious to the whole exchange and went downstairs to buy cigars. I shrunk into myself. I knew it was bad and after 4 hours passed and the baby did not come back, I became hysterical. The specialist came to talk to us just as the helicopter landed to fly my newborn son to a children’s hospital. They let us kiss him goodbye and I will never forget how he looked leaving. They had put little yellow ear muffs on him and had a special incubator just for flying. He looked perfect. I looked at my husband and I looked at the doctor and I told them I was going too. After a small battle, I won and with a prescription for pain pills we left and headed for the hospital 6 hours after giving birth.

When we arrived at the neonatal unit at the children’s hospital, we were allowed to go in to see Jeb. They had Iv’s, catheters, pulse O2 and umbilical lines running everywhere. He looked so pitiful. They had ultrasounded his brain, spine, and kidneys before we arrived. Jeb had a paraspinal cyst and the mengiocele was a marker that something was wrong. The next day, they moved Jeb out of the unit and we were counseled by geneticists, lactation specialists, etc. The doctors told us that Jeb looked fine and that we should bring him back in 3 months for an MRI to check on the cyst. I asked them if there was any chance he could become paralyzed and they assured me that there was not. He had no neurological deficits that they could find. I could not shake that feeling that this was not right and questioned them again with the same answers repeated.

April 1st, we returned to the Children’s Hospital for the MRI. Jeb had to be sedated and the test was delayed due to some emergency cases, so Jeb was still asleep when we went to see the doctor. The neurosurgeon walked in, looked at us and told us that Jeb’s spinal cord was split in two, He had tethered cord syndrome, which means the spinal nerves are stuck down and a large cyst around his spinal cord at the base. He checked Jeb and said, that his feet were not the same size, his rectum was not working and that he would probably never have control of his bowels or bladder. He probably could not walk without braces if at all. We stood there in total shock. After I composed my self, I said you told us he did not have any deficits 2 months ago and now he is never going to walk. The doctor told me that I was just going to have to accept this and that when Jeb turned 1 year old, they would have to do surgery on his spinal cord. He thought that it was too dangerous at this time, but more damage could occur as the spinal cord grew and the nerves that were stuck down would be pulled. I wanted a second opinion and I wanted God more than anything. We drove home with broken hearts.

I called my minister has soon as we returned and we all cried together. The next day, I called spinia bifida clinics and asked for the best pediatric neurosurgeon in the country. Of course they are all good, but I kept hearing about a doctor at Chicago Children’s Hospital that did a lot of research in this area. I wanted him, so I called a doctor I worked with who was also an excellent doctor and friend named Dr. Sheridan and asked him to set us up in Chicago. He said, that’s a long way to drive (10 Hours), I tell you what, I am going to see if Dr. Sanford in Memphis can see you and if you are not satisfied with that, we sill send you to Chicago. This was a Friday afternoon. Dr. Sanford could see us on Monday morning.