Nathan James Morrison
24th July 2007-12th May 2008
On the 24th July 2007 Our Little "Angel" Nathan James Morrison was born. He was gorgeous with big blue eyes and a sparkling smile, he stole the hearts of many people.
A few months went by when we started to notice Nathan wasn't reaching his milestones. We had taken him on a number of occasions to the GP's and Hospital, everything was fine they told us.. Nathan just has a cold, carry on giving him calpol.
I remember once saying to Nathan's Daddy " I don't know what I would do if anything was to happen to our baby Nathan. He was our Angel, our little boy who we loved so much. But we just had something inside telling us something just wasn't right.
One day Nathan was really poorly, he wasn't taking his feeds was vomiting what he had back up. We noticed Nathan was really floppy too, he had no head control and he couldn't move his leg's but could move his forearm's and wiggle his toes slightly.
On the 12th of December 2007 we took Nathan to the Walk in Centre, they said to take him straight to the hospital. They had called the children's ward to let them know we were on our way.
Nathan stayed in hospital a couple of days, he was diagnosed with having Bronchiolitis. We were told Nathan would be feeling unwell for several weeks. They gave us some antibiotics to take home to finish of the course he was getting in hospital. We were then discharged with no follow up appointment. A few days went by, we just couldn't settle something just wasn't right., Nathan didn't seem to be getting any better. Most of our day's we spent in the house. We had taken Nathan back to the GP's and told them he had been diagnosed with bronchiolitis. They were happy with Nathan because he was so bright and alert it gave them no worries for concern. We were sent home.
On the 24th December 2007 we took Nathan to casualty, we were now out of our heads with worry, "This can't be right we just kept on saying". We were seen by a doctor who sent us straight up to the children's ward. We told them Nathan had a fever was vomiting after feeds. Also that he was recently discharged from hospital with Bronchiolitis 2 weeks ago. Nathan had a cough and was really chesty. Also Nathan was really struggling with his breathing. We were discharged with 24 hour open access
On the 27th of December 2007 we returned to casualty Nathan was very poorly by this point. We were sent to the children's ward again. He was diagnosed with having a right upper zone of pneumonia. He was treated with a 7 day course of IV Augmentin. Then changed to oral cephalexin. A chest e-ray was taken it showed upper lobe pneumonia. Nathan was having Gaviscon Sachet's and Ranitidine to treat for Gastro - oesophageal reflux. Nathan was also being given Lactulose for constipation. He also was getting feed by an NG Tube, and was having oxygen via nasal canula to help him with his breathing. Nathan was receiving physio everyday to help move his secretions. While in hospital they noticed Nathan was really Floppy. Although we had mentioned this on a number of occasions. They decided to take some blood tests. We were told the test would take up to 2 weeks. Not aware of what they were testing for, we knew it wasn't good. We were discharged on the 4th January 2008, by this time Nathan was off the oxygen also he had been weaned back on to his bottles.
A week later the tests were back. That was the longest and terrifying week of our lives. All sorts of things were going through our heads.. We got a telephone call from a Genetic Counsellor asking if she could come to the house to see us.
On the 15th of January 2008 our world had fallen apart. We were told Nathan had Spinal Muscular Atrophy (SMA) though unsure which type and that there was no cure. This just wasn't happening it was like living a nightmare. The Genetic Counsellor left information about Nathan's condition, she explained they would be a lot of help and support. As soon as she left we checked out the internet and was horrified at what we found after a few clicks, we knew that he definitely had type1 SMA also that he probably wouldn't make his first birthday.
On the 16th January 2008 we contacted The Jennifer Trust Which was a great help and comfort to us. The lady told us to take our time that we could call anytime if only just to cry. They arranged for a support worker to visit us at home. She ordered us some sensory equipment, which Nathan loved. We covered his room in the lights and blacked out his windows so we could use them during the day. We have a lot of happy memories and photos.
Also The Jennifer Trust bought us a car seat for Nathan to suit his needs, which was donated from the trust. This was to help us travel safely. It enabled Nathan to lay down as he couldn't sit up right, he had no head control.
This was then the start of what felt like a roller coaster. It became from no one helping or wanting to know, into everyday somewhere to go or someone to see.
On the 20th January 2008 we took Nathan to the Children's Ward as we now had 24 hour access. Nathan was really struggling with his breathing, Nathan had nasal flaring. He was seen by an on call physio but was sent home with oral amoxicillin.
On the 28th January 2008 We once again rushed to the hospital, Nathan was having increased secretions a chesty cough and he was off his feeds. That morning will live in our memory as one of the worst days of our lives, we were told that Nathan was nil by mouth and would not bottle feed again. Although Nathan did enjoy having little tastes of his milk also he loved chocolate.
He was diagnosed with having a right upper zone pneumonia again he was treated with Iv antibiotics.
On the 29th January 2008 we had our meeting with Professor Bushby in Newcastle, while there Nathan had a turn and was struggling with secretions. Professor Bushby was very sympathetic and said not to worry everything would be sorted on our return. When we got back to Darlington the staff at the hospital could not do enough for us, oxygen was ordered for home and all equipment was found for us ( SATs Monitor, Suction Machine, Apnea Monitor). Nathan was given movicol for his constipation also hyoscine patches for his secretions.
They were really good but a bit of a nightmare to get a happy medium, although we wouldn't have been without them. Nathan was seen by a dietician she put him on High Energy milk feed's through a pump over night, plus a couple of feeds throughout the day. Nathan was gaining weight nicely and stopped vomiting which was great. We had to do a DNAR form stating our Emergency Care Plan For Life Threatening Events. We were so frightened for Nathan we didn't want him to suffer in any way. By the Friday we were allowed home.
Nathan's Consultant asked for a secretion sample to be taken for test to be done. This was to see if anything had grown and needed to be treated.
We were happy at home and suctioning and the physio became second nature to us, every morning we would have our two hour ritual of lying on the floor and tip tapping Nathan while he watched his beloved Cbeebies shows. We managed to get Nathan off the oxygen and life was normal for a while. We visited the seaside, the sea life centre and went out a lot.
On the 14th March 2008 we received a phone call telling us the secretion samples Nathan had taken , showed he had sudomonus which was really hard to get rid of. That if we started to treat him it might make him uncomfortable. So we decided to take their advice.
On the 16th March 2008 we decided to go away for the weekend to the seaside, but by the Sunday something was not right and we decided to rush home to Darlington driving through the night. We thought it had something to do with the sudomonus in his secretions. When we arrived at the hospital Nathan was really poorly they tried to give him IV antibiotics, but he was so ill that his veins had collapsed. He was put on a Colistin nebuliser to be given twice a day, by the teatime he was looking noticeably better. This would also treat for sudomonus. He was also given Ciprofloxacin to be given twice a day as well.
The next few days were up and down and on the Thursday we decided to get things ready at home leaving Nathan with his Nanna May. We were only at home about a half hour when we got a phone call that Nathan had been resuscitated.. We rushed back to hospital in total shock. All that night one of us stayed awake on watch over Nathan, but by 5am Nathan had went down again needing Resuscitating .
That morning the Doctor came and told us that they were taking him off all medication and putting him on Morphine as he probably would not see the weekend out. We were heart broken our world was turned upside down. We told family and friends to come and say goodbye to Nathan, our local vicar came and blessed him. We washed and bathed Nathan and had his prints done, Nathan was loving the attention, all weekend we waited for something to happen.
On the Easter Sunday 2008 we decided to take Nathan home one last time to enjoy his sensory room and to be in familiar surroundings. He was so settled at home that we stayed and didn't return to the hospital.
Being at home we had time to reflect and thought that we had been pushed into the decisions of Good Friday 2008. We made some calls and got the consultant to reinstate his medications. Also we requested for us to be shown how to resuscitate Nathan if he was to arrest again. We just wanted to know that we had done everything in our power to help Nathan.
We also had the privilege of night care for Nathan, a nurse would come at night and care for him so we could have a bit of sleep. The Consultant and outreach nurses were coming regularly and physio would call once a week. Also a nursery play nurse would call twice a week.
After a few weeks of struggling with his secretions, Nathan was put onto Glycopyrolate. This was better than the patches but he sometimes got really dry and that was a danger in itself.
We gained a further 9 weeks with Nathan, He was so adorable. We couldn't of wished for a better son. He was perfect, His big blue eyes would tell a story and his smile would melt your heart. He was amazing, "Our little Angel sent from heaven."
On the10th May 2008 Nathan's breathing had become really laboured he had cold sweats, his secretions had dried up so didn't require a lot of suctioning which was strange. He was on quite a lot of oxygen from 3 litres up to 15 litres. His colour was very pale. He looked so poorly. We called for the out reach nurse to call and see Nathan. She really wasn't happy with the way Nathan looked also. She told us to get in touch with a doctor to visit Nathan. The doctor arrived and listened to Nathan's chest, he said it was clear, now that was a big surprise.
Over the next 24hrs Nathan was looking worse. He was requiring more morphine. Nathan became in a sort of trance with his eyes directed at the ceiling. His feet were freezing cold as he had no circulation. As his body started shutting down. We decided to call for the outreach nurse again
On the 11th May 2008 early that morning the nurse told us Nathan was struggling that he was just really tired. She said to carry on making him comfortable that they would call day or night if we needed. We just knew Nathan didn't have long left. We stayed awake all night just watching him and holding on to his little hand.
On the morning of the 12th May 2008 the out reach nurse called, she thought Nathan was a lot worse and started to make phone calls to Nathan's consultant, Nathan's consultant said she would call at 11.30am. Also we informed Nathan's GP as she played a big part in Nathan's health. Nathan's GP called around straight away, she also thought Nathan was struggling and looked really tired. She said she would call again later that day.
At 11.30am Nathan's consultant arrived she said Nathan didn't have long left although he was a little fighter. She thought Nathan was really fighting by the way his breathing looked. Nathan was taking a big breath in and a judder of breaths following. This was really hard to watch. The consultant asked me to give Nathan some more MST (morphine) to relax him.
At 12:50pm 12th May 2008 Nathan finally fell "asleep" after what was such a brave battle. We then with the help of the nurses washed and changed Nathan. Family came around to say their goodbyes. The local vicar came and prayed for Nathan. Also Nathan's GP called to certify his death.
Nathan stayed at home for a couple of hours until the Funeral directors came to collect him. Nathan looked so peaceful it was like he had a smile on his face also you could even see his amazing blue eyes peeping through a little.
We also have a little girl called Sophie who adored her little brother and Nathan loved her too. Whenever Sophie entered the room he had this huge smile on his face and sparkling eye's. He loved her so much.
Sophie's world has been torn apart. Not only has she lost a brother but also a very special friend. Sophie continues to ask about Nathan and wants him back home. She kisses his photos and plays with his toys. We will carrying on talking about Nathan to Sophie he was such a special baby boy. Like Sophie is our special little girl whom we love so much.
Nathan has made us all better people, brought us closer together. Nothing little seems as bad anymore. We live in memory of Nathan and will carry on to do so. He will never be forgotten and will be loved forever. What time we had together we will treasure forever. We are more than proud to call you our son and little brother. You're Our shining star.
Can we just say, it is all very hard but so rewarding, if you asked us to do it again we would a million times over if that meant having our little boy back again.
All our love we send to you Nathan "our little natty lad"
Mammy, Daddy and big sister Sophie aged 3 x x x
See Also
Inspirations Page: Our Little Angel Nathan James | 
