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Ryan and I are planning to do the Manchester 10k
In memory of our beautiful son Charlie James
This is our story
In April 2008 we found out we were expecting our second baby, and given a due date of 23rd dec,How exciting a Christmas baby. At our 20 weeks scan we were overjoyed to find out that Louie would be having a baby brother. All was well until I reached 24 weeks when a routine examination showed that I was measuring too big for my gestation; it was from this moment that our perfectly normal pregnancy would change our lives completely.
I had weekly visits to the hospital for scans and monitoring, each week something new would be found, I was carrying a large baby, too much water, not enough water; the baby was not measuring correctly. Week after week we still had no answer.
We were finally sent to Leeds Fetal medicine unit on the 12th nov 2008, where we were told that our baby had short limbs, but they could still not give a reason as to why!
Later that afternoon I started with labour pains and went to the hospital at 8.30 pm.
Charlie James was born at 12.03 am on 13th November and weighed 6lb 8 oz.Which for a six week early baby was a good size!
Charlie was immediately taken to the special care unit. It was 4.00 am before we were taken to see him, it seem like an eternity.
We were really surprised when we saw him all his face was puffy and his top lip pertruding,like he was puckering up for a kiss.x To us he was perfect :-) .
He lost quit a lot of weight in the first week ,as he was born with a lot of water and his weight went down to 5lb 2oz.
Charlie stayed on the SCBU for 11 days but amazed everyone how well he was doing, Breastfeeding well, putting small amount of weight back on slowly, but they were happy for him to come home, under the watchful eye of the outreach team.
Charlie’s weight was always an issue he never really put on weight like a newborn should, after several week of yo yo ing it was decided that Charlie need more that just breast milk alone, it was suggested that I topped him up with a fortifier for extra calories.
Still struggling with his weight Charlie now was refusing to take any kind of milk via Breast of bottle so a N G tube was fitted, and all feeds would go through his Nasal tube.
As any parents would be ,we were frantic with worry, as to why our baby was not putting on any weight. Charlie had several test which all came back negative, even now nobody could not give us any answers Why.!
From 28th December 2008 Charlie spent a lot of time back and forwards to the hospital, he had ecg's echo grams all came back ok.
On March 9th 2009 after taking Louie to school Charlie had what only I could describe as a fit! Not having seen a fit before I really wasn't sure but I knew that Charlie was not ok.
I immediately took him to A&E where they told me his oxygen levels were very low and his heart rate was 283 .Charlie was stabilized over several hours then transferred to the intensive care unit at Halifax.
The next few days were so hard we didn't know really what was going on, it was suggested that we went to Leeds for a assessment on the cardiac ward, and was assured it was nothing to worry about and that we would be back the same day.
We sat all day waiting to go, to be finally told we wouldn’t be going that day as they were full and we would have to wait two days, as you can imagine we were totally beside ourselves with worry and we insisted that we went the following day.
After a blue light ambulance ride to Leeds We finally arrived on the cardiac unit ward 10, where we were met with a team of Nurses and Doctors, after a short Examination we were told that Charlie was lucky to still be here and that he would have to have a procedure done immediately to correct his heart rhythm which was now 303.
This meant they would have to stop his heart and restart it. Ryan and I were inconsolable, we thought we were going on a routine assesment,to be told this and that he may not come out of it was devastating.
After the first few hour they soon realized that Charlie was capable of controlling his own heart rhythm, and it was decided that the procedure did not have to be done, And would be controlled via medication.
Charlie was to remain on the ward at Leeds where they could run more tests. It was found that Charlie had two major heart defects pulmonary stenosis,which is a narrow valve to the heart chamber and Tachycardia, which is a abnormal heart rhythm.
The pulmonary steno sis would mean a small operation but only could be done once the Tachycardia had settled down.
After two weeks of treatment for the Tachycardia Charlie was now ready for his minor operation to widen his heart valve.
After the surgery we were advised that all had gone well and we would be able to go home the following day March 31st 2009.
We were so excited to be bringing Charlie home and to finally know why he had’t been putting weight on due to his Heart conditions.
That morning I went to the ward to get things ready to come home. As I entered Charlie’s room as he lay in his cot I put the light on and opened his curtains ,I knew at that point something was wrong Charlie was not responding, we had lost our beautiful boy x x x
No parent should have to go through the heartache of losing a child, we have decided to do the Manchester 10k on 15th may in remembrance of our special brave little man.x x x
We were very fortunate to have fantastic friends and family who have helped us to try and come to terms with losing Charlie.
We are very grateful for all the help we have received, especially to The Joseph salmon Trust .Therefore all sponsor money received will go to this fantastic charity to hopefully help another local family in need of support at such a difficult time.
Love
Debbie, Ryan, Louie, Archie
and our Angel Charlie x x
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