Daniel The Early Days
Daniel was born 23rd April 1997. He was the 2nd of my 3 children. My first baby died after my placenta ruptured when I was 36 wks pregnant.
When I was 6 mths pregnant with Daniel it was found on a scan that he had a cleft and extra finger and toes. Further tests were performed and we were told Daniel had an un-survivable chromosome abnormality. I was advised to have a termination.
There was no way on this earth I was going to kill my unborn baby. I had a second opinion again the conclusion was Daniel had either Trisomey 13 or Trisomey 18 Patau or Edwards Syndrome. Other problem found by scans also pointed to the abnormality`s and what was considered by doctors certain death for Daniel either before he was born or soon after.
Daniel continued his slow growth pattern, I was monitored on a regular basis. At 37 weeks Daniels movements decreased and his heart slowed. I was prepared for my 2nd emergency C section.
My hear pounded I was so scared but refused to be knocked out so I was given a spinal block. As the surgery progressed my thoughts turned to what I would see. The way the doctors had described him was terrifying he was suppose to have a tiny head with larger body hardly any ears, extra fingers and toes, but worst of all he was supposed to have a bilateral cleft lip and palate were a large section of his face would be missing. I am unable to decided the feeling I had in side of me. As soon as he was born we were told he would be unable to breath on his own.
The moment came, I was trying to see what was happening as soon as he was born but I was still being operated on. There was no sound just silence from everyone. Then all of a sudden I heard him cry, the the nurse brought him over he looked perfect he had a small cleft lip and extra little fingers. As the end of my operation neared I was taken to the recovery room. It was about 1 hr after Daniel had weighed in at 5lb 14oz not a bad weight for a baby 3 weeks premature. Callum my first baby was 6lb 10oz though at 36 weeks.
As Daniel approached being an hour old he suddenly turned blue and went floppy. Was this it ? He was whisked away to the special care baby unit ( SCBU ). I lay there wondering all sorts running through my mind !
A long while later a trail of doctors and nurses came in looking so very serious. We were told Daniel would not make it through the night. They were sure he had the chromosome abnormality and the results would be back in the morning.
I was allowed to visit Daniel for a short time I willed him to live. I was taken back to the side ward as I was quite poorly after the operation. They promised to come for me if things changed. It was a very long night. Every time footsteps came to the door I jumped expecting history to repeat itself. The night came and went Daniel was still with us.
I grew stronger and was allowed to see Daniel whenever I wanted. A first he wasn't going to be fed as we were told his stomach wasn't formed properly this was his major abnormality that they were looking for all the time. Daniel kicked up so much fuss I was allowed to express my milk and he was fed via tube. He proved the doctors wrong as his body began to work as it should. I managed to get hold of many different bottles to feed Daniel as he improved he was moved down the SCBU rooms.
We were in the middle room when Daniel turned yellow with Jaundice. He was placed under the ultra violet light. I was at this point able to feed Daniel with squeezy bottles,he was slow and sick but we managed I was also shown how to tube Daniel and feed him via the tube.
Daniel was found to have a heart defect. It was thought it would need surgery. He never came off oxygen since he was admitted to SCBU. There was also a problem with his blood sugar he had severe hypoglycemia.
The test results failed to come back the next day and the following days after. At one point the sister of the ward came into the room on SCBU were Daniel was. She said to me Daniel was going to die I had to except this. I walked out slammed the door on her after saying NO HE`S NOT.
After a week the results came back. The doctor took me into his office. I new before he told me I said there negative. I was right, but still the fact was according to the doctors he would never do anything he would never smile he would just lay there. He was given a condition Called Pseudo Trismoney 13 so rare I was only able to trace one other child in the late days but he had died before he turned one.
Still the negativity continued I was taught how to control the oxygen Daniel would need once he was allowed home. I was given a flat on the SCBU ward. At 3 wks old we were transferred to Birmingham for heart surgery. As we waited at Birmingham Children`s hospital Daniel`s oxygen failed. He breathed on his own without it. Again sticking his little fingers up at the doctors. It was then decided that an operation wasn't necessary, we were transferred back to Shrewsbury SCBU.
By this time Daniel was in the top room. One day I was allowed to travel home to pick some things up. I was only home a short while when I took ill and couldn't get my breath. I was rushed back to Shrewsbury, were It was found I had a blood clot on the lung. Luckily the clot was breaking up but I was put on warfrin. Daniel was over the other side of the hospital so the same night I walked over the doctors and nurses were very cross but my baby needed me. I threatened to sign myself out as I was that distressed at being away from my baby, it was then decided the SCBU doctors would look after me on the SCBU ward. I got better quickly thankfully. This was the second time this had happened I developed a clot after Callum was born and ended up in North Staffs for the afternoon again the clot broke up quick.
Not long after Daniel was allowed to go home by this time the determination inside me was coming to the surface no way was I going to let my baby die. The next year was a roller coaster of emotion. Daniel put weight on and grew totally out of the lines in the health visitors book.
I had been brought down for years emotionally on my life but having Daniel turned me into a totally different person. I grew stronger in all aspects of my life. As soon as Daniel was born we had to prove the doctors wrong. I was a mum on a mission to give Daniel the best life possible and I did. I can live with the fact I did everything possible to make Daniel`s life the best it could be. We continued to prove doctors wrong in many ways, as you will be able to read on my other pages. I have no regrets I never let Daniel down. Daniel had 10 happy years he visited many places and did lots of things able body children do. If there was a problem we over came it, he never missed out on hardly anything we always found a way. I hope what I did for Daniel still continues to encourage other mums with special children never to give up hope. We may have had only 10 special years with such a brave determined little boy but that was 10 years more than the life he would never have had if I hadn't fought the doctors from before he was born. People say I have been an inspiration to others but I only did what needed to be done to make my special boys life a happy one. In memory of Daniel who died New Years Eve 2007 God Bless xxxx
PS A BIG HUGE THANK YOU TO DANIEL`S SCBU NURSE SHARON SHE WAS THERE AT THE BEGINNING AND AT THE END WE HAVE NEVER LOST CONTACT. FROM DANIEL`S FIRST NIGHT IN SCBU TILL TODAY SHE EVEN CAME TO ALDER HEY TO BE WITH US AS DANIEL LOST HIS FIGHT FOR LIFE OVER THE DREADED NIGHTMARE CHRISTMAS OF 2007
SHARON IS A TRUE ANGEL XX