At 36 weeks into my pregnancy, my husband Jay and I thought we would be full of excitement preparing for the arrival of our baby. Instead we felt apprehensive and worried.
At our 36 week scan, doctors noticed that our baby was in an excess of amniotic fluid which meant that he was not swallowing fluid as he should be. They concluded that this was because his ‘stomach bubble’ was very small and as a result of this he may be born with Tracheo Oesophageal Fistula (TOF). This is a condition which occurs when the oesophagus, the food pipe which connects the mouth with the stomach, is blocked. After telling us this news, they told us they wouldn’t be able to confirm the condition until he was born, which as you can imagine made us feel very uneasy for the remainder of my pregnancy.
On 27 November 2012 our gorgeous baby boy, Winter Jay Hamilton was born at 39 weeks, weighing six pounds, six ounces at Hinchingbrooke Hospital. We were so happy and so excited but this was short lived when doctors confirmed that Winter did have a blockage in his oesophagus. They told us he would have to go straight to the Neonatal Intensive Care Unit (NICU) at The Rosie Hospital in Cambridge, to be operated on the next day. This was about a 45 minute journey away from our home in Wyboston, St Neots, but we couldn’t even think about the practicalities of anything at that moment. We just knew we had to get Winter the best possible treatment available and for him that was at The Rosie Hospital.
Winter had an operation to repair his oesophagus the following day. Jay and I were so upset; our little boy had only been in the world one day and already had to go through all of this distress. We could think of nothing else but his recovery and didn’t want to leave his side. We hadn’t even thought about where we were going to stay until we met Alan, the house manager of Chestnut House. He offered us a room in the ‘Home from Home’ accommodation that the charity, The Sick Children’s Trust, provides and I cannot begin to describe the relief that swept over us.
The house was brilliant because it was just below the NICU, so we would never be too far away from Winter and it really took an extra weight off our minds; we didn’t need to try and find somewhere to stay or worry about the financial costs this would incur. We were able to stay in Chestnut House free of charge for however long Winter was in hospital and we would never be more than a two minute lift ride away from him.
The house facilities offered us everything we needed; there was a clean kitchen, bedroom, bathroom and even a laundry room as well. Winter’s recovery was the only thing we could think about but having the house ensured we could look after ourselves too. Although this was far from our minds at the time, looking back it was really important as getting some much needed rest and eating nutritional meals enabled us to keep our strength up and stay strong for Winter. Staying in the house also helped to give us a sense of normality in what was such a stressful and chaotic situation. We could put a load of washing on and cook a home-made meal. It sounds ridiculous now valuing these things so much, but at the time these tasks really helped us to cope with the situation.
The first few days that Winter was in intensive care were heart breaking as we saw him sedated and covered in tubes from all different kinds of medical machines. It was horrible to see but we knew he was in the best place and he was being looked after. As the days went by Winter was getting much stronger. On the third day following his operation we were able to change his bedding and his nappy for the first time. It was such a big step and we were so happy to be able to do this. Doctors also showed us how to wash his little face and how to keep his lips moist. It was amazing to be able to do this ourselves, after watching only nurses and doctors do this so far and although we were welcoming parenthood a little differently to others, we were so excited.
After a week in intensive care Winter’s doctors gradually reduced his medication and took him off his ventilator. We were so pleased; it was awful to see Winter taking in all this medication and without his ventilator we could finally see his beautiful little face properly. He was able to breathe all on his own, which was amazing, and we could finally see him on his way to recovery.
Following this he had his chest drain and cannulas (tubes used to administer his medicine) removed which meant he only had the trans-anastomotic tube (TAT) left in for feeding. The nurses gradually began to up his feeds and we were thrilled; Winter was getting better and better. We were relieved; it seemed the worst was over. We could even have our first proper cuddles with him which were long overdue.
We began to have meetings with the speech and language therapist (SALT team) to try and feed Winter by mouth; they helped him to practise his sucking instinct so he could take in his feeds more easily. This was really helpful, not only for Winter but for us too. We learnt something new about Winter’s condition every day and became able to cope with his needs a lot better. It was only because we were staying so close to Winter in Chestnut House that we could do this and be there for him day and night. If we had been staying somewhere else or travelling home, we wouldn’t have been able to get to grips with his illness as quickly as we did. I think there is always a fear of the unknown and the more we understood his illness, the better we felt about it and the more positive we were.
A lot of babies with TOF also have other complications to do with their spine and kidneys, which we were worried about, but Winter’s tests came back clear, which was great news. He became stronger every day and after ten days in intensive care he was transferred into the Children’s Ward ‘C3.’ It was very different and we even had our own bed so we could stay with Winter and start practising night times with him. When Winter moved wards we thought that the next step would be to take him home. However he started experiencing reflux; a condition where milk swallowed starts to come back up into the oesophagus. Lots of babies suffer from reflux but because Winter had TOF as well, the surgeons said if the appropriate medication didn’t work he may need another operation. This would mean it would be weeks before we could take him home, not days as we had thought, which was devastating.
Luckily the reflux medication slowly began to take effect and the doctors were a lot happier with his condition. After an x-ray video contrast (an x-ray taken while Winter was feeding), we were able to meet with the SALT team once again, the nutritionist and dietician. They were all really pleased with Winter’s progress and told us we could finally take him home.
So on the 20 December 2012 we were able to take our little boy home, just in time for Christmas. Winter’s total hospital stay was just over three weeks and at fourteen weeks old he had his feeding tube taken out. He has made massive progress since; he is now taking all his food orally and has even started taking some purees. We are so thankful to The Sick Children’s Trust for offering us accommodation the whole time Winter was in hospital.
Lucy Hamilton, Winter’s Mum
Friday 5 July 2013
At 36 weeks into my pregnancy, my husband Jay and I thought we would be full of excitement....
At 36 weeks into my pregnancy, my husband Jay and I thought we would be full of excitement preparing for the arrival of our baby. Instead we felt apprehensive and worried.
At our 36 week scan, doctors noticed that our baby was in an excess of amniotic fluid which meant that he was not swallowing fluid as he should be. They concluded that this was because his ‘stomach bubble’ was very small and as a result of this he may be born with Tracheo Oesophageal Fistula (TOF). This is a condition which occurs when the oesophagus, the food pipe which connects the mouth with the stomach, is blocked. After telling us this news, they told us they wouldn’t be able to confirm the condition until he was born, which as you can imagine made us feel very uneasy for the remainder of my pregnancy.
On 27 November 2012 our gorgeous baby boy, Winter Jay Hamilton was born at 39 weeks, weighing six pounds, six ounces at Hinchingbrooke Hospital. We were so happy and so excited but this was short lived when doctors confirmed that Winter did have a blockage in his oesophagus. They told us he would have to go straight to the Neonatal Intensive Care Unit (NICU) at The Rosie Hospital in Cambridge, to be operated on the next day. This was about a 45 minute journey away from our home in Wyboston, St Neots, but we couldn’t even think about the practicalities of anything at that moment. We just knew we had to get Winter the best possible treatment available and for him that was at The Rosie Hospital.
Winter had an operation to repair his oesophagus the following day. Jay and I were so upset; our little boy had only been in the world one day and already had to go through all of this distress. We could think of nothing else but his recovery and didn’t want to leave his side. We hadn’t even thought about where we were going to stay until we met Alan, the house manager of Chestnut House. He offered us a room in the ‘Home from Home’ accommodation that the charity, The Sick Children’s Trust, provides and I cannot begin to describe the relief that swept over us.
The house was brilliant because it was just below the NICU, so we would never be too far away from Winter and it really took an extra weight off our minds; we didn’t need to try and find somewhere to stay or worry about the financial costs this would incur. We were able to stay in Chestnut House free of charge for however long Winter was in hospital and we would never be more than a two minute lift ride away from him.
The house facilities offered us everything we needed; there was a clean kitchen, bedroom, bathroom and even a laundry room as well. Winter’s recovery was the only thing we could think about but having the house ensured we could look after ourselves too. Although this was far from our minds at the time, looking back it was really important as getting some much needed rest and eating nutritional meals enabled us to keep our strength up and stay strong for Winter. Staying in the house also helped to give us a sense of normality in what was such a stressful and chaotic situation. We could put a load of washing on and cook a home-made meal. It sounds ridiculous now valuing these things so much, but at the time these tasks really helped us to cope with the situation.
The first few days that Winter was in intensive care were heart breaking as we saw him sedated and covered in tubes from all different kinds of medical machines. It was horrible to see but we knew he was in the best place and he was being looked after. As the days went by Winter was getting much stronger. On the third day following his operation we were able to change his bedding and his nappy for the first time. It was such a big step and we were so happy to be able to do this. Doctors also showed us how to wash his little face and how to keep his lips moist. It was amazing to be able to do this ourselves, after watching only nurses and doctors do this so far and although we were welcoming parenthood a little differently to others, we were so excited.
After a week in intensive care Winter’s doctors gradually reduced his medication and took him off his ventilator. We were so pleased; it was awful to see Winter taking in all this medication and without his ventilator we could finally see his beautiful little face properly. He was able to breathe all on his own, which was amazing, and we could finally see him on his way to recovery.
Following this he had his chest drain and cannulas (tubes used to administer his medicine) removed which meant he only had the trans-anastomotic tube (TAT) left in for feeding. The nurses gradually began to up his feeds and we were thrilled; Winter was getting better and better. We were relieved; it seemed the worst was over. We could even have our first proper cuddles with him which were long overdue.
We began to have meetings with the speech and language therapist (SALT team) to try and feed Winter by mouth; they helped him to practise his sucking instinct so he could take in his feeds more easily. This was really helpful, not only for Winter but for us too. We learnt something new about Winter’s condition every day and became able to cope with his needs a lot better. It was only because we were staying so close to Winter in Chestnut House that we could do this and be there for him day and night. If we had been staying somewhere else or travelling home, we wouldn’t have been able to get to grips with his illness as quickly as we did. I think there is always a fear of the unknown and the more we understood his illness, the better we felt about it and the more positive we were.
A lot of babies with TOF also have other complications to do with their spine and kidneys, which we were worried about, but Winter’s tests came back clear, which was great news. He became stronger every day and after ten days in intensive care he was transferred into the Children’s Ward ‘C3.’ It was very different and we even had our own bed so we could stay with Winter and start practising night times with him. When Winter moved wards we thought that the next step would be to take him home. However he started experiencing reflux; a condition where milk swallowed starts to come back up into the oesophagus. Lots of babies suffer from reflux but because Winter had TOF as well, the surgeons said if the appropriate medication didn’t work he may need another operation. This would mean it would be weeks before we could take him home, not days as we had thought, which was devastating.
Luckily the reflux medication slowly began to take effect and the doctors were a lot happier with his condition. After an x-ray video contrast (an x-ray taken while Winter was feeding), we were able to meet with the SALT team once again, the nutritionist and dietician. They were all really pleased with Winter’s progress and told us we could finally take him home.
So on the 20 December 2012 we were able to take our little boy home, just in time for Christmas. Winter’s total hospital stay was just over three weeks and at fourteen weeks old he had his feeding tube taken out. He has made massive progress since; he is now taking all his food orally and has even started taking some purees. We are so thankful to The Sick Children’s Trust for offering us accommodation the whole time Winter was in hospital.
Lucy Hamilton, Winter’s Mum
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