Dear Mr. Sparks,
It was our twenty week scan for our third child; we were thanking our lucky stars we had come this far as a threatened miscarriage earlier in the pregnancy had almost meant this day would never come. I was feeling nervous- call it intuition - my husband Phil was trying to keep my spirits up and tried reassuring me all was OK before the scan.
A short while later there on the screen was our little boy, Callum. He was OK, now I could relax; then the dreaded silence as the sonographer hovered over one part of my expectant belly. My nerves were getting the better of me. "Is everything OK?" I asked. I was told that she’d need to discuss something with her colleague. Lying there, scared beyond belief with two sonographers whispering about what they could see. Even at this point no one would confirm what they had found. We were told a consultant was on the way over to complete the scan but not told anything else. The wait was unbearable….what was wrong with our little baby? The consultant confirmed their suspicions…CDH. It was then explained what CDH was, and what chances our little guy had. We were given a hard choice - terminate or take our chances. We were then led to what amounted to be a storeroom for old chairs and office equipment. The four walls seemed to close around us; what a choice to make. The after care from the scan was dreadful, just led into this room and given 15 minutes to talk it over. We needed a lifetime to decide, not 15 minutes. How could we not try giving our little boy a fighting chance? We remembered the scan; Callum seemed to be giving us a ‘thumbs up’ when they scanned over his hands, so we saw this as a sign and made our decision to give him the best possible chance for life.
It was only 12 weeks later that I felt a trickle of water. Nothing to be concerned about but thought it best to get checked at the hospital. My waters were breaking….NO NOT YET….I’M NOT READY! I was transferred to the closest available specialist hospital, St. George's Hospital in Tooting, South London. My terrified husband followed behind. Steroids were given to help Callum’s lungs but the waters stopped and I was kept in the hospital, confined to the bed. I was closely monitored as infection could set in but it was thought best to allow Callum to grow as much as possible as they didn’t want him to be premature to add more complications to what was now discovered to be a severe CDH. His liver, bowels, & stomach were in his chest cavity, stunting the growth of his lungs and putting pressure on his heart.
Two weeks later, on August 16th 2001 I gave birth to Callum. He even cried when he was born; I had been told he may not have been able to do this. They even asked if I wanted to hold him; I was more keen to get him ventilated and cared for than to delay this, so I told them I didn’t want to. Little did I know that I would always regret that. They’d also run out of blue bonnets to hold the tubes in place and had to put him in a pink one, now they’d think he was a girl, as if he didn’t have enough to contend with. So here we were, myself and Phil, in an empty delivery room. Callum had been sent down to the SCBU and everything seemed so unreal.
We were given a little Polaroid picture, but the first time we saw Callum was in the baby unit. He was so tiny, but perfect. He was on an oscillator and bounced around in the incubator. It was from this first encounter with the oscillator that his kindred spirit became the bouncing Tigger from Winnie the Pooh. He was stable and for the first time things looked positive. I thought all was going to be all right and we had made the right choice. This was just the beginning of what was going to be the most hurtful and wonderful experience of my life.
Callum’s first hurdle would be to be strong and well enough to have surgery to fix the diaphragm. It was a roller coaster ride from then on. One of those times in life when you feel the great highs and the terrible lows. It was a fight for time to get Callum ready for the surgery; without it he didn’t stand a chance. It finally came to a point where it was decided by the team that Callum was as ready as he possibly could be for the operation. The surgeon, who was brutally blunt, said he felt in his opinion that Callum wouldn’t survive the operation; he gave the ultimate responsibility to the anaesthetist. It was decided to go for it. We were led into the parents’ room at the SCBU; the wait was agonising. It grew dark but neither of us could face turning on the light. Our hearts were in our mouths every time we heard footsteps approaching the door. This seemed to last an eternity.
Finally, hours later, the door opened and the surgeon appeared, even he didn’t turn on the light and we finally saw the man in this blunt uncaring surgeon. He told us in a quivering voice what a little fighter we had there and how proud he was of him to come through such invasive surgery. He admitted he had been wrong to doubt Callum and with that wished us luck and left. We were left drained and elated; our little boy was proving them all wrong. Even the anaesthetist was amazed, she told us the amount of drugs Callum had to get him through the operation should have been enough to get a 12 year old through major heart surgery but he was already coming round before the surgery started. Our little star was marking his mark on everyone that came into contact with him.
We felt from here we were on the road to recovery. We knew Callum would have a lifetime of health issues but he would be alive. We even discussed moving him to our local hospital for the next couple of months so he could be monitored. That news was the best, it meant Callum was getting better and we wouldn’t need to do the 2.5 hour drive from our home to the hospital anymore. The travel was taking its toll on us both as well as our other two boys who were constantly being babysat by a very good friend.
For the first time in weeks we allowed ourselves to relax a little. Until one night we were phoned by the hospital and told Callum had taken a turn for the worse. His sats were low and the required O2 was up to almost 95%. It was soon discovered he had contracted MRSA. The roller coaster ride was back, but this time it just seemed to be one big dip. It seemed to just get worse from then on as Callum’s health deteriorated. Things seem to have come to a head on what we called ‘dreadful Thursday’. We were asked to consider turning off the life support. How had things come to this? For the first time in a while my mind was clear and looking at Callum and the pain he was in, I found the strength to see things from Callum’s point of view. I thought it would be for the best. Phil couldn’t face this decision and flatly said no way. It was a day later as we entered the unit that Callum had one of his amazing days. How many times was this unique little boy going to surprise everyone? There, with a huge grin was one of his special nurses. She was so thrilled to show us how well he was doing. We then had one of the best weekends with him. No thrill rides just plain sailing.
The following week Callum’s condition took a turn for the worse again. It was on Friday 7th December, we entered the unit and immediately saw another of Callum’s favourites ‘Tom-Thumbing’ him. She calmly said he was being a naughty boy and wasn’t behaving himself. This went on for a couple of hours; his sats would drop as soon as he was back on the ventilator but would rise slightly when being ‘Tom-Thumbed’. Bless this nurse, she did this for two hours. Even the doctor who took over for a few minutes complained his hands were hurting. She just pushed him aside and carried on. They sent for the consultant and we were moved back to the parents’ room. The consultant came to see us and said they would try to change his tube as it may be blocked, if that didn’t help then he may be trying to tell us something. We knew then it wasn’t the tube and for the first time we saw things the same way. As expected the tube wasn’t the cause, Callum had just had enough.
We were asked to come and say goodbye, this just wasn’t real, our beautiful boy was leaving us. There wasn’t a dry eye around his bed as they handed me Callum. He calmly looked at me, held my gaze for a few seconds then looked at Phil. He then looked back at me and then his tube was removed. He gently closed his eyes and took his last breath. At last now Callum was in peace.
We got to bath him and dress him. Leaving him was the hardest part, we both felt as if we were abandoning him. We left the hospital to a beautiful, warm sunny day and considering this was December saw this as a sign from Callum. Not a day goes by when we don’t think about him. He touched us and all others who came to know him in such a wonderful way; we knew even then we had made the right decision not to terminate. As we always say to Callum, our unique little boy, you’ll always be in our hearts and will never be forgotten.
Written by Callum’s mom, Michelle Weber (Great Britain)
It was our twenty week scan for our third child; we were thanking our lucky stars we had come this far as a threatened miscarriage earlier in the pregnancy had almost meant this day would never come. I was feeling nervous- call it intuition - my husband Phil was trying to keep my spirits up and tried reassuring me all was OK before the scan.
A short while later there on the screen was our little boy, Callum. He was OK, now I could relax; then the dreaded silence as the sonographer hovered over one part of my expectant belly. My nerves were getting the better of me. "Is everything OK?" I asked. I was told that she’d need to discuss something with her colleague. Lying there, scared beyond belief with two sonographers whispering about what they could see. Even at this point no one would confirm what they had found. We were told a consultant was on the way over to complete the scan but not told anything else. The wait was unbearable….what was wrong with our little baby? The consultant confirmed their suspicions…CDH. It was then explained what CDH was, and what chances our little guy had. We were given a hard choice - terminate or take our chances. We were then led to what amounted to be a storeroom for old chairs and office equipment. The four walls seemed to close around us; what a choice to make. The after care from the scan was dreadful, just led into this room and given 15 minutes to talk it over. We needed a lifetime to decide, not 15 minutes. How could we not try giving our little boy a fighting chance? We remembered the scan; Callum seemed to be giving us a ‘thumbs up’ when they scanned over his hands, so we saw this as a sign and made our decision to give him the best possible chance for life.
It was only 12 weeks later that I felt a trickle of water. Nothing to be concerned about but thought it best to get checked at the hospital. My waters were breaking….NO NOT YET….I’M NOT READY! I was transferred to the closest available specialist hospital, St. George's Hospital in Tooting, South London. My terrified husband followed behind. Steroids were given to help Callum’s lungs but the waters stopped and I was kept in the hospital, confined to the bed. I was closely monitored as infection could set in but it was thought best to allow Callum to grow as much as possible as they didn’t want him to be premature to add more complications to what was now discovered to be a severe CDH. His liver, bowels, & stomach were in his chest cavity, stunting the growth of his lungs and putting pressure on his heart.
Two weeks later, on August 16th 2001 I gave birth to Callum. He even cried when he was born; I had been told he may not have been able to do this. They even asked if I wanted to hold him; I was more keen to get him ventilated and cared for than to delay this, so I told them I didn’t want to. Little did I know that I would always regret that. They’d also run out of blue bonnets to hold the tubes in place and had to put him in a pink one, now they’d think he was a girl, as if he didn’t have enough to contend with. So here we were, myself and Phil, in an empty delivery room. Callum had been sent down to the SCBU and everything seemed so unreal.
We were given a little Polaroid picture, but the first time we saw Callum was in the baby unit. He was so tiny, but perfect. He was on an oscillator and bounced around in the incubator. It was from this first encounter with the oscillator that his kindred spirit became the bouncing Tigger from Winnie the Pooh. He was stable and for the first time things looked positive. I thought all was going to be all right and we had made the right choice. This was just the beginning of what was going to be the most hurtful and wonderful experience of my life.
Callum’s first hurdle would be to be strong and well enough to have surgery to fix the diaphragm. It was a roller coaster ride from then on. One of those times in life when you feel the great highs and the terrible lows. It was a fight for time to get Callum ready for the surgery; without it he didn’t stand a chance. It finally came to a point where it was decided by the team that Callum was as ready as he possibly could be for the operation. The surgeon, who was brutally blunt, said he felt in his opinion that Callum wouldn’t survive the operation; he gave the ultimate responsibility to the anaesthetist. It was decided to go for it. We were led into the parents’ room at the SCBU; the wait was agonising. It grew dark but neither of us could face turning on the light. Our hearts were in our mouths every time we heard footsteps approaching the door. This seemed to last an eternity.
Finally, hours later, the door opened and the surgeon appeared, even he didn’t turn on the light and we finally saw the man in this blunt uncaring surgeon. He told us in a quivering voice what a little fighter we had there and how proud he was of him to come through such invasive surgery. He admitted he had been wrong to doubt Callum and with that wished us luck and left. We were left drained and elated; our little boy was proving them all wrong. Even the anaesthetist was amazed, she told us the amount of drugs Callum had to get him through the operation should have been enough to get a 12 year old through major heart surgery but he was already coming round before the surgery started. Our little star was marking his mark on everyone that came into contact with him.
We felt from here we were on the road to recovery. We knew Callum would have a lifetime of health issues but he would be alive. We even discussed moving him to our local hospital for the next couple of months so he could be monitored. That news was the best, it meant Callum was getting better and we wouldn’t need to do the 2.5 hour drive from our home to the hospital anymore. The travel was taking its toll on us both as well as our other two boys who were constantly being babysat by a very good friend.
For the first time in weeks we allowed ourselves to relax a little. Until one night we were phoned by the hospital and told Callum had taken a turn for the worse. His sats were low and the required O2 was up to almost 95%. It was soon discovered he had contracted MRSA. The roller coaster ride was back, but this time it just seemed to be one big dip. It seemed to just get worse from then on as Callum’s health deteriorated. Things seem to have come to a head on what we called ‘dreadful Thursday’. We were asked to consider turning off the life support. How had things come to this? For the first time in a while my mind was clear and looking at Callum and the pain he was in, I found the strength to see things from Callum’s point of view. I thought it would be for the best. Phil couldn’t face this decision and flatly said no way. It was a day later as we entered the unit that Callum had one of his amazing days. How many times was this unique little boy going to surprise everyone? There, with a huge grin was one of his special nurses. She was so thrilled to show us how well he was doing. We then had one of the best weekends with him. No thrill rides just plain sailing.
The following week Callum’s condition took a turn for the worse again. It was on Friday 7th December, we entered the unit and immediately saw another of Callum’s favourites ‘Tom-Thumbing’ him. She calmly said he was being a naughty boy and wasn’t behaving himself. This went on for a couple of hours; his sats would drop as soon as he was back on the ventilator but would rise slightly when being ‘Tom-Thumbed’. Bless this nurse, she did this for two hours. Even the doctor who took over for a few minutes complained his hands were hurting. She just pushed him aside and carried on. They sent for the consultant and we were moved back to the parents’ room. The consultant came to see us and said they would try to change his tube as it may be blocked, if that didn’t help then he may be trying to tell us something. We knew then it wasn’t the tube and for the first time we saw things the same way. As expected the tube wasn’t the cause, Callum had just had enough.
We were asked to come and say goodbye, this just wasn’t real, our beautiful boy was leaving us. There wasn’t a dry eye around his bed as they handed me Callum. He calmly looked at me, held my gaze for a few seconds then looked at Phil. He then looked back at me and then his tube was removed. He gently closed his eyes and took his last breath. At last now Callum was in peace.
We got to bath him and dress him. Leaving him was the hardest part, we both felt as if we were abandoning him. We left the hospital to a beautiful, warm sunny day and considering this was December saw this as a sign from Callum. Not a day goes by when we don’t think about him. He touched us and all others who came to know him in such a wonderful way; we knew even then we had made the right decision not to terminate. As we always say to Callum, our unique little boy, you’ll always be in our hearts and will never be forgotten.
Written by Callum’s mom, Michelle Weber (Great Britain)
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