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Angel James's Story

(July 22, 1999-August 30, 2001)

Our first involvement in James story starts on Thursday October 3rd 1999 when we received a phone call from our local social services asking if we would take our first foster child. We were advised he was a terminal ill baby boy being cared for in our local children's hospice.

We were asked to discuss this with our four children, Dario 14, Ashleigh 12, Nikki -Anne 9, & Joanne 7 years old. It was hoped we could reply by the following Monday . We took our children away for a weekend and explained what we knew about this baby. The information we had was of a baby boy called James who was 12 weeks old who had been born without a Brain and was not expected to live for more than a further few weeks. Needless to say the children like ourselves didn't hesitate, we knew we would all love and take care of him no matter how long he lived.

Andrew and I went to visit James for the first time on Monday October 7th where the staff at the hospice were excellent and obviously loved him very much. That day I completely fell in love with this darling baby boy. The hardest thing I had to do was walk out with out him. We had planned a family holiday for the children's half term week so it was decided that James would come to live with us after this.

We spent that first week at the hospice visiting James with our children and getting to know him ready for his move to us. We finally brought him home on the Monday 22nd October 1999 which then started a whole new way of life for us.

During that first week of visits we learnt about James ‘s first weeks of life. Born on July 22nd 1999, James was 9 weeks premature weighing 1.92kgs (4lb 3 ˝ oz) with an enlarged head. Hydrocephalus was expected. X-rays and a CTI scan indicated James had no brain only a stem he was diagnosed with a condition called hydranencephaly. James was only expected to survive hours or days.

James was transferred to the Rainbows Children's Hospice in Loughborough, during this transfer he stopped breathing. Mandy ( Bereavement Support Nurse) and Liz (Would be Carer ) from the hospice stopped the car and repositioned him in his car seat, James decided to start breathing again.

James then spent the next weeks being cared for in the Hospice where he continued to fight and prove the medics wrong. The staff had succeeded in feeding James from a bottle although this was a very slow process he was gaining small amount of weight. James had also learnt how to make himself known, crying when he was left alone to sleep, when what he wanted was company, which of course he always got. James was also put on medication to help control any seizures, he protested strongly to this (not liking the taste). It was then decided that as James was progressing a family needed to be found.

Knowing very little about James condition we knew we had a lot to learn.

We kept in touch with the staff at the hospice and our GP (who is also the Dr for Rainbows) gathering all the information we could to try and ease James condition . It was decided to give James drugs to try and reduce the fluid in his head and he was put on frusimide and acetazolmide. These brought little comfort and James remained a very unhappy little boy never sleeping for long, vomiting his feeds and obviously spending most of his time in distress. James’s first hospital stay in December 1999 came in the first few months of him living with us. He underwent a double hernia operation where we were told he would properly not survive the anaesthetic. On arriving back on the ward James continually cried a high pitch cry which we were told was due to the pressure in his head now increasing by 1cm per week. We had also been told that a shunt operation would "not be in James best interests as these children do not live for long and as there was no brain there was nothing to attach a shunt to." We returned home with James who had made a good recovery after his op but he continued to vomit which prompted a Ng tube to be passed. We spent the following weeks at the hospice all hours of day and night asking the staff to re -pass the tube James had vomited out. ( we did eventually get trained to do this ourselves).

Although James head carried on getting bigger he appeared to be settling down with pain relief and we started to get responses when he was being fed and talked to he was even seen to smile on the rare occasions.

By March 2000 James had been admitted twice more into hospital with viral infections and had again bounced back. He continued to thrive on and off during the next few months and stayed reasonably healthily enjoying holidays away with us and one very short stay with his friends at the hospice.

It was in May 2000 that we heard of someone appearing on our local Morning T.V with a child having the same condition as James we contacted the TV station but got no response then sometime later a friend showed us an article in a magazine a lady from Scotland ( Agnes) had written about her 7 year old daughter Rachel. We contacted Agnes who then put us in touch with this amazing support group. With whom we have been in contact ever since.

It was reading the children's stories and a friend from our church that prompted us to push to have James ‘s shunt put in. We contacted our GP and a referral was made to Great Ormond Street Children's Hospital in London where we saw a top consultant. The consultant wished he had seen James months sooner as a shunt op would have been more appropriate then but he was still willing to try. James had his Op in January 2001 from which he recovered quite well and returned home after only 7 days.

By this time it had also been decided that a Gastric Tube would be much better for James feeding although he had started to take a small amount of solid food he was still vomiting badly so this op was performed in Feb. 2001.

James first Shunt blocked after only a few weeks and he was readmitted to have a second shunt operation in march 2001 after a few days we were transferred back to our local hospital for James to recover. Another week and we were home again only to find James ‘s head had sprung a leak ,another rush to London to find James’s shunt had blocked and become infected . Another Operation to remove his shunt and put in an external drain. After six weeks in London James was transferred back to our local hospital now with no shunt in place as he appeared to be draining his excess fluid on his own. But still with a very poor outlook. James had suffered several chest infections and a severe weight loss. He needed to have oxygen for most of the time by now.

We finally got home in June and started to look forward to James second birthday which we celebrated with a great big party like we had on his first.

We had also planned to meet with Agnes and Rachel and we did this on July 27th 2001 and spent three wonderful days together including Rachel's 8th birthday a weekend that will always stay in our hearts.

A week after our meeting with Agnes and Rachel (Who by now we had named Little Miss Sunshine)

we had our family holiday in our touring caravan , 3 weeks away from home enjoying sun sea and sand.

We arrived at our destination on Saturday August 4th and we managed two wonderful days of our holiday before James took really ill again struggling to breath. He was admitted to Norwich hospital and we were told that his heart was enlarged and he was getting a fluid build up, they did not expect him to pull through the night.

James once again fought and proved them wrong . IV antibiotics and oxygen saw a small improvement over the next two weeks and we were allowed to take James back to our holiday on Monday 20th August. By early hours of Thursday mourning James was once again struggling to breath and we returned to Norwich hospital. This time we were told he maybe only had hours to live, certainly not long.

Andrew brought the children in to say there goodbyes and I asked for James and I to be transferred back to Rainbows Children's Hospice so he could be with the people who loved and cared for him in the beginning. I got the transfer on the Friday and after a uncertain long journey we were greeted by Mandy, the nurse who had collected James from the hospital in the beginning.

James spent his last week enjoying the love and support of the Rainbow Hospice Staff and his family.

James joined the Angels on Thursday 30th August 2001. He is now resting in the remembrance garden with other little Angels at the Hospice.

We will always love and miss you our little man.

 

 

 

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August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

Please report any broken links or missing photos to angelbearmom@shaw.ca