Personal Experiences
A Bundle of "Foy" As I write this in 2010 it all seems such a long time ago since 2007 when my life went from being happily pregnant to having the 20 week scan and learning that our baby had a life threatening heart condition. I say it seems like a long time ago but that is only when you think of it in terms of numbers. In actual fact I live every day partly in that year re-living some part of it. I seem to have the ability to be completely stuck in that year and dying inside because of its events but at the same time (and some days I don't know how) being able to continue with my life. At that 20 week scan when we were being told about the condition which our baby had I desperately wanted to know if our baby was a boy or a girl. This became increasingly important over the weeks as we named him and took notice of every little movement he made fully aware that it may be all we have to remember him by. I tried to get to know his little character by playing with him through my belly and wished desperately that he could stay in there forever as it was the safest place for him. Once he was born he would be fighting for his life which we were told would be about 24 hours without surgery. I became completely wrapped up in the life of our baby along with our new routine of regular hospital appointments. My days were spent trying to be hopeful and planning for our new arrival coming home-whether it be in weeks or even months and my nights were spent crying and fearing the worst. It was so hard to understand how this baby who was very active and happy inside me would not be able to sustain his own life without intervention once he was born. Foy was born in the afternoon of 19 July with only half a working heart. He was taken to the corner of the room to be checked over and wrapped up before he was passed to me for a quick cuddle before he was taken away to get ready for his journey to Birmingham Children's Hospital where his surgery would be. We stared at each other and I didn't quite know what to think. All I could see through the blankets was a little face. My mind was blank. Foy was silent. It was not how it should be. Once he was taken I was focussed on looking and acting as good as I could so I could leave the hospital to travel to Birmingham and be with him. I arrived there that evening and my husband was already there. Over the next 36 hours we stared and stared at our baby boy. Every time his monitor beeped we panicked. After 24 hours Foy was struggling to breathe for himself. He was getting tired and was very swollen. He was taken to intensive care and ventilated for the next 12 hours until he was taken to theatre. Four and a half hours later he was back on intensive care. He did well in theatre- they did not need to bypass the heart or give him a blood transfusion. After 7 days we were ready for going home but one last check on his wound put that to an end. His wound site was completely open, so we then started talks with doctors of how to deal with it. Foy avoided another trip to surgery but had to have treatment and special skin growing gel put in the wound to help it close. After another 2 weeks we were allowed home but we had to return to Birmingham Children's Hospital every other day to check the wound until they were happy to transfer our care to Derby. Life at home was very hard but at the same time a real blessing. Foy did not sleep and his feeding was a constant worry as he did not put on weight and would only breastfeed. There was no way of getting his fat supplement in to him so we started to prepare ourselves for him having a feeding tube. Foy looked healthy-yes he was thin but he was not blue and he did smile and chat. However looking back now I realise how much he struggled to settle. I suspect he was quite sore and uncomfortable. This has become more vivid since I have had my second child and know how a healthy baby behaves. Three days before Foy died he started to refuse his medicines, which was very strange for him. Two days later we took him to hospital. As the nurse inserted his feeding tube his heart stopped. We were taken to another room whilst doctors worked on him but then they came to get us so we could say goodbye. As we arrived by his side they were still working on him and I went in to shock and couldn't move. Mark went to him and touched him. As he did this Foy's heart rate suddenly increased so they gave him more adrenaline and decided to move him to intensive care. Once down in intensive care the doctors realised there was no chance his heart could start working again and we were left alone with him. I think they were waiting for us to realise the same and eventually they asked if we were ready to switch off the machines. We held him tight whilst his little heart stopped beating. Leaving him in the hospital was so hard. A part of me stayed there with him. I am not the same person I was before, I am not complete. The post mortem revealed that Foy had a condition called Ivemark Syndrome. His lungs were mirrored, his adrenal glands were fused, he had a malrotated bowel and no spleen. All this on top of only having half a working heart. I am so proud of Foy for living so long with all these problems but every day I live with the guilt of being the person responsible for developing him inside me in a way that he could not sustain life. Every day I wonder whether we should have let him die naturally instead of putting him through 9 weeks of suffering. We decided for our son that he should have surgery. Was our need to fight for his life a selfish decision because we so desperately wanted to share our lives with him? But we lived in hope and that kept us going from the day we were first told of his problems. We needed to give the surgery a go so we did not spend the rest of our lives wondering if Foy would still be with us. I wonder how Foy remembers me. Does he think I cuddled him enough, and tried as hard as I could to do everything right. I hope he does but I will always wish I did more. It is very tiring to live with the grief and pain I have every day. I think it is impossible to explain how I feel to someone who has never experienced a similar situation. I love life and hate life all at the same time but I thank God for healing my little boy's heart in heaven and taking away his suffering. Of course I question why Foy had these problems and I get angry, but I look forward to the day I am with him again forever. Written by Lisa Morgan, September 2010
Supporting anyone affected by the death of a baby and promoting research to reduce the loss of babies’ lives
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5 April 2019
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