Children's Heart Unit, Leeds NHS Trust

Our Story

In this new section we hope to include stories from parents and families about their experiences.
Email your story to us.

Andrew's Story

Background
Andrew was born in March at our local hospital and all seemed fine. We were elated, the birth had been so straightforward, mother and son appeared to be progressing well. We spent most of the first day ringing friends and family conveying our delightful news, unaware of what was about to happen.

During his first night in hospital Andrew was not feeding particularly well. Worryingly he had cold purple-blue hands and feet, an indication of poor circulation. Concerned, my wife brought this to the attention of the midwife whom in turn alerted the duty doctor. Within minutes mother and baby were transferred to the special care baby unit where Andrew was given an ultra-sound and x-ray. The staff were remarkably quick to respond, very efficient and very caring.

On arrival at the hospital as the father I was taken to a side room. It didn't take much intuition to realise something was dreadfully wrong. My immediate thought was that we were about to be told we would lose Andrew. It's a terrible feeling to realise after nine months of nurturing and expectation, our bubble of happiness would just burst. We were about to become helpless to aid our child.

Diagnosis
The x-ray and the ultrasound revealed that the main arteries to the heart had incorrectly connected during gestation. This meant that blood was returning to the body without being oxygenated via the lungs. The Doctor gave a very thorough explanation of Andrew's condition (Transposition of the Great Arteries - TGA) but much of what was said went over our heads - it was proving difficult to concentrate. Hearing the words "nothing the hospital can do." seemed to stand out more than ".transfer to Leeds General Infirmary as they have a children's specialist heart unit."

Andrew looked so small in the incubator. We were starting to lose control; drugs we'd never heard of were being administered to our baby boy.

Still in a daze we followed in the direction of the blue lights of the ambulance the 24 miles to Leeds. Although the journey was difficult, it allowed me to take stock. We had to make sense of things fast if we were to help our 24-hour-old son. Above all we had to be strong so we could make decisions on his behalf. Easier said than done, but it was during that journey I decided to leave my emotions behind, at least for the time being.

Admission
We wasted time parking and waiting in a queue in A&E in order to find out where Andrew had been taken. Eventually directions where forthcoming.

[The child's heart unit is in the Jubilee wing, ICU is Ward 4 on level C, and High Dependency is on Ward 10 on level E. For security both are behind locked doors - buzz for attention.].

Andrew had been admitted to ward 10. On arrival we found the staff to be most helpful and very supportive. As a specialist unit they are well versed with the medical condition such as Andrew's, but more importantly as a children's unit the care extended to parents not just the young patient. As parents, we needed more reassurance than Andrew who clearly didn't understand what was going on. We were ushered to a room by a nurse and awaited the Paediatric Heart Consultant. He explained everything in detail; basically Andrew needed to have a small tear between the chambers of his heart to allow temporary mixing of oxygenated and non-oxygenated blood. He knew exactly what was required, but to be honest it was very difficult to take everything in as we were still desperately trying to make sense of the situation. Our lives were in turmoil, and it seemed a mountain to climb to allow surgery on our new born baby. We had no choice, Andrew would not survive without surgery and the sooner he was made comfortable the better his chances. With reservations I signed the form, and waited. For the second time in a matter of hours I thought we had to prepare ourselves for the news that we had lost our son. Thoughts of how I could console my wife, the family, cope with a funeral and all the practicalities that would ensue flooded through my mind over and over again.

Later the consultant came back. The op had gone well and Andrew was stable. He would be on the High Dependency Unit to recover and await his switch operation. The relief was huge; we couldn't wait to see Andrew. He looked so peaceful, lying in his hospital cot. The family were informed and arrangements made for visits to our new born. This was both difficult and eerie compared to the joy of the previous day.

Ward 10 - High Dependency (1)
For two weeks we waited in ward 10 for Andrew's switch operation. The staff were terrific. They obviously knew how to deal with both patients and parents. Within hours we were given a family room on the level below the ward. A comfortable twin room with television, shower/toilet. There's a kitchen/laundry room down the corridor and a family room with telephone. A pass for parking in the local multi-storey also helped with the practicality, reducing the stress of a most stressful situation. It was difficult but bearable to live on site at the hospital. Everyone was most helpful and understanding and we soon made good friends with the staff, making the wait so much easier. Andrew soon settled down and it wasn't long before we knew all the ins and outs of each line being drawn on the monitors. The nursing staff and doctors were most helpful answering our questions; it was all new so we had many to ask.

On a practical level, it is important that as parents we stayed healthy. Eating facilities in the LGI include an on site shop, a sandwich kiosk and a canteen. The canteen is expensive if you are there any length of time but mothers who have recently given birth are allowed free meals on the ward and there is a voucher system for the canteen. Also there are a number of supermarkets fairly close to the LGI. We bought out and used the cooking facilities extensively to keep costs down. Furthermore, there are a number of good restaurants within walking distance, which we also benefited from when Andrew was more settled.

Visitors
As a children's unit visiting is very flexible. However, by choice we limited the number of visitors coming in to see Andrew for a very good reason. We felt that any visits could potentially bring infection and although the family wanted to show their support, they soon realised that infection prevention would be the best form of help. This is not always easy to manage, but bare in adding to a child's illness through infection could set back a child's recover by months. Also we found communication a problem, having to update every member of the family on each day's progress can be a very tiring and expensive. The mother-in-law was put to good use as the centre of communications. It not only kept her busy, it stopped mobiles going off at inconvenient times and allowed us to concentrate on Andrew. [Mobiles are not allowed to be on in the hospital.]

Pre-Op
We had been warned that the pre-op brief was very graphic. We were given a folder and detailed explanation of what to expect and what could go wrong, also further forms to fill-in. I appreciate that this is necessary under the patient's charter, but in many ways it was difficult to come to terms with as we had little or no choice in opting for an alternative. What we wanted was reassurance and perhaps false hope rather than graphic detail for potential problems. The surgeon and the Sister were both thorough and pulled no punches. Once again we were prepared for the worst as the surgeon outlined what Andrew was about to go through, a major operation on a heart the size of a walnut. After that I needed a drink, but quietly hoped he didn't! What struck us was the surgeon's dedication and the confidence and respect his team had in him. So we existed in a state of what can only be described as worried confidence. We waited for the day of the operation with trepidation.

Operation
It's very difficult to describe handing over your baby to the anaesthetist. My wife and I descended in the lift in almost silence. We already knew how dangerous general anaesthetic is for adults, let alone babies. The anaesthetist had made a point of visiting us earlier ward 10, but even with his air of confidence and obvious care, we still found it difficult. Andrew looked so peaceful, it would have been easy to have run away with him, but we just had no choice. This operation was going to save his life, and it was needed now. The anaesthetist and his team were most understanding.

Waiting for news...
I had decided that it would be best if we had a diversion during the operation. We would only be in the way if we spend the day pacing. So we went to Skipton. It was difficult to be away from Andrew, but the hours passed much quicker. We visited Skipton church and also Bolton Abbey which was full of tourists enjoying the sunshine oblivious to our pain. We prayed and prayed, it just seemed right, and phoned friends and family. I expected the day to drag, but it seemed to shoot by probably because we kept ourselves busy. We where told to expect a six hour plus operation so were back at LGI for four o'clock on the dot, but the operation lasted ten hours. At eight o'clock our prayers had been answered, Andrew had survived the operation and was despatched to the children's Intensive Care Unit ICU.

Ward 4 ICU
The information given before the operation prepared us well for what we were about to see. Andrew was head to toe covered in wire. He was hooked up to about ten machines. He looked pathetic, so small in amongst all these tubes. He looked pink, pink from the operation wash to prevent infection but also a new colour in his face and body no longer the purple-blue. He was calm, fast asleep in spite of the tubes down his throat, the wires, the noise, the beep of monitors, he slept through it all. We didn't know whether to laugh or cry, he looked so helpless.

The staff on Ward 4 are very dedicated to their task. A minimum of one nurse per patient, each and every vital statistic is continually monitored and analysed with great expertise. Fluids in and fluids out. Initially Andrew has being given a large quantity of drugs. In order to carry out the operation, Andrew's heart had to be stopped. In order to do this his body temperature was dropped. The first 24-48 hours was crucial hence the number of drugs.

The expertise of the staff allows them to carry out a balancing game. Slowly the drugs are reduced, Andrew's response monitored and if positive further reductions made. The drugs have to be withdrawn very controlled. Working twelve hour shifts, the nurses were obviously very well versed in the necessary procedures. Although I spent many hours into the early morning looking on Andrew, most were for my benefit rather than his; the nurses were more than capable. Andrew responded well. I couldn't believe how well a two week old could respond and within 72 hours he was out of Intensive Care and sent back to High Dependency.

Ward 10 - High Dependency (2)
The second time around High Dependency seemed a breeze. We knew most of the staff and the procedures and it was so good to see familiar surrounding. Although Andrew wasn't out of the woods, for the first time we felt he was making progress and with the hurdle of the operation behind us we were starting to relax.

Each day Andrew went from strength to strength, his little personality starting to shine through. He'd lost quite a bit of weight since his birth and was for the first time starting to put weight on. We expected to be in High Dependency at least a week, but within three days we were given the good news that Andrew had recovered enough to be allowed home.

Discharge
The pleasure putting Andrew in the car for the first time was unbelievable. We couldn't thank the nursing staff enough, but as it had come a little quick we didn't have time to speak to all our new friends. The journey home was long, but pleasurable, and to put Andrew in his cot at home for the first time made us realise what a trauma we'd been through and come out the other end. But it hadn't finished there. We ensured that we adhered to the regime that he was not to have visitors for a fortnight and not allowed out for three weeks. Although these weeks seemed to drag as we became more and more impatient, it was well worth the wait. An infection at this stage would have been crucial and happy to report none came.

After care/ongoing support
Andrew appears to be going from strength to strength. He's gained much weight and is almost back to the centile as shown in his red book. He's very happy and well natured, particularly now that he has settled down after his initial trauma. He will have to have an annual check up but if all goes well he has a full recovery to look forward to. In this we feel we are the lucky ones and have nothing but thanks and admiration to all the staff at LGI.

Practical advice

• As a nation we tend to be over polite. Don't hesitate to convey medical concerns you have for yourself or your children. Aiding medical staff to act swiftly helped save Andrew's life.

• Be strong for your child, children pick up on positive vibes.

• Keep visitors to a minimum. Visitors carry infections, which can be as harmful to your child's recovery.

• Contact with the outside can keep you sane, but as mobiles shouldn't be used in the hospital it is often difficult to look after your child whilst constantly fielding questions from concerned friends and family. We used Andrew's Grandma as an external updating contact point, a job she thrived on!

• Accommodation is provided by the hospital if you qualify. This is extremely helpful, but be considerate to other families. Full facilities are available in the family accommodation i.e. TV, microwave, washing, cooker, telephone, family room etc. There was nothing worst than returning from the ward only to find half eaten food left where you were about to eat.

• Multi-storey parking permits are available for long stay patients, ask the ward clerk.

• Take it one day at a time rather than looking at the whole picture which is often too much to take in all at once. Dealing with small bite size chunks are easier to cope with.

• Difficult to do, but try to see the funny side of things, it keeps you sane.

• Above all, look after yourself (and partner), eat, wash and take breaks away from the bedside regularly. You need to keep yourselves healthy in order to be there when your child needs you.


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Andrew's Story Background Andrew was born in March at our local hospital and all seemed fine. We were elated, the birth had been so straightforward, mother and son appeared to be progressing well. We spent most of the first day ringing friends and family conveying our delightful news, unaware of what was about to happen. During his first night in hospital Andrew was not feeding particularly well. Worryingly he had cold purple-blue hands and feet, an indication of poor circulation. Concerned, my wife brought this to the attention of the midwife whom in turn alerted the duty doctor. Within minutes mother and baby were transferred to the special care baby unit where Andrew was given an ultra-sound and x-ray. The staff were remarkably quick to respond, very efficient and very caring. On arrival at the hospital as the father I was taken to a side room. It didn't take much intuition to realise something was dreadfully wrong. My immediate thought was that we were about to be told we would lose Andrew. It's a terrible feeling to realise after nine months of nurturing and expectation, our bubble of happiness would just burst. We were about to become helpless to aid our child. Diagnosis The x-ray and the ultrasound revealed that the main arteries to the heart had incorrectly connected during gestation. This meant that blood was returning to the body without being oxygenated via the lungs. The Doctor gave a very thorough explanation of Andrew's condition (Transposition of the Great Arteries - TGA) but much of what was said went over our heads - it was proving difficult to concentrate. Hearing the words "nothing the hospital can do." seemed to stand out more than ".transfer to Leeds General Infirmary as they have a children's specialist heart unit." Andrew looked so small in the incubator. We were starting to lose control; drugs we'd never heard of were being administered to our baby boy. Still in a daze we followed in the direction of the blue lights of the ambulance the 24 miles to Leeds. Although the journey was difficult, it allowed me to take stock. We had to make sense of things fast if we were to help our 24-hour-old son. Above all we had to be strong so we could make decisions on his behalf. Easier said than done, but it was during that journey I decided to leave my emotions behind, at least for the time being. Admission We wasted time parking and waiting in a queue in A&E in order to find out where Andrew had been taken. Eventually directions where forthcoming. [The child's heart unit is in the Jubilee wing, ICU is Ward 4 on level C, and High Dependency is on Ward 10 on level E. For security both are behind locked doors - buzz for attention.]. Andrew had been admitted to ward 10. On arrival we found the staff to be most helpful and very supportive. As a specialist unit they are well versed with the medical condition such as Andrew's, but more importantly as a children's unit the care extended to parents not just the young patient. As parents, we needed more reassurance than Andrew who clearly didn't understand what was going on. We were ushered to a room by a nurse and awaited the Paediatric Heart Consultant. He explained everything in detail; basically Andrew needed to have a small tear between the chambers of his heart to allow temporary mixing of oxygenated and non-oxygenated blood. He knew exactly what was required, but to be honest it was very difficult to take everything in as we were still desperately trying to make sense of the situation. Our lives were in turmoil, and it seemed a mountain to climb to allow surgery on our new born baby. We had no choice, Andrew would not survive without surgery and the sooner he was made comfortable the better his chances. With reservations I signed the form, and waited. For the second time in a matter of hours I thought we had to prepare ourselves for the news that we had lost our son. Thoughts of how I could console my wife, the family, cope with a funeral and all the practicalities that would ensue flooded through my mind over and over again. Later the consultant came back. The op had gone well and Andrew was stable. He would be on the High Dependency Unit to recover and await his switch operation. The relief was huge; we couldn't wait to see Andrew. He looked so peaceful, lying in his hospital cot. The family were informed and arrangements made for visits to our new born. This was both difficult and eerie compared to the joy of the previous day. Ward 10 - High Dependency (1) For two weeks we waited in ward 10 for Andrew's switch operation. The staff were terrific. They obviously knew how to deal with both patients and parents. Within hours we were given a family room on the level below the ward. A comfortable twin room with television, shower/toilet. There's a kitchen/laundry room down the corridor and a family room with telephone. A pass for parking in the local multi-storey also helped with the practicality, reducing the stress of a most stressful situation. It was difficult but bearable to live on site at the hospital. Everyone was most helpful and understanding and we soon made good friends with the staff, making the wait so much easier. Andrew soon settled down and it wasn't long before we knew all the ins and outs of each line being drawn on the monitors. The nursing staff and doctors were most helpful answering our questions; it was all new so we had many to ask. On a practical level, it is important that as parents we stayed healthy. Eating facilities in the LGI include an on site shop, a sandwich kiosk and a canteen. The canteen is expensive if you are there any length of time but mothers who have recently given birth are allowed free meals on the ward and there is a voucher system for the canteen. Also there are a number of supermarkets fairly close to the LGI. We bought out and used the cooking facilities extensively to keep costs down. Furthermore, there are a number of good restaurants within walking distance, which we also benefited from when Andrew was more settled. Visitors As a children's unit visiting is very flexible. However, by choice we limited the number of visitors coming in to see Andrew for a very good reason. We felt that any visits could potentially bring infection and although the family wanted to show their support, they soon realised that infection prevention would be the best form of help. This is not always easy to manage, but bare in adding to a child's illness through infection could set back a child's recover by months. Also we found communication a problem, having to update every member of the family on each day's progress can be a very tiring and expensive. The mother-in-law was put to good use as the centre of communications. It not only kept her busy, it stopped mobiles going off at inconvenient times and allowed us to concentrate on Andrew. [Mobiles are not allowed to be on in the hospital.] Pre-Op We had been warned that the pre-op brief was very graphic. We were given a folder and detailed explanation of what to expect and what could go wrong, also further forms to fill-in. I appreciate that this is necessary under the patient's charter, but in many ways it was difficult to come to terms with as we had little or no choice in opting for an alternative. What we wanted was reassurance and perhaps false hope rather than graphic detail for potential problems. The surgeon and the Sister were both thorough and pulled no punches. Once again we were prepared for the worst as the surgeon outlined what Andrew was about to go through, a major operation on a heart the size of a walnut. After that I needed a drink, but quietly hoped he didn't! What struck us was the surgeon's dedication and the confidence and respect his team had in him. So we existed in a state of what can only be described as worried confidence. We waited for the day of the operation with trepidation. Operation It's very difficult to describe handing over your baby to the anaesthetist. My wife and I descended in the lift in almost silence. We already knew how dangerous general anaesthetic is for adults, let alone babies. The anaesthetist had made a point of visiting us earlier ward 10, but even with his air of confidence and obvious care, we still found it difficult. Andrew looked so peaceful, it would have been easy to have run away with him, but we just had no choice. This operation was going to save his life, and it was needed now. The anaesthetist and his team were most understanding. Waiting for news... I had decided that it would be best if we had a diversion during the operation. We would only be in the way if we spend the day pacing. So we went to Skipton. It was difficult to be away from Andrew, but the hours passed much quicker. We visited Skipton church and also Bolton Abbey which was full of tourists enjoying the sunshine oblivious to our pain. We prayed and prayed, it just seemed right, and phoned friends and family. I expected the day to drag, but it seemed to shoot by probably because we kept ourselves busy. We where told to expect a six hour plus operation so were back at LGI for four o'clock on the dot, but the operation lasted ten hours. At eight o'clock our prayers had been answered, Andrew had survived the operation and was despatched to the children's Intensive Care Unit ICU. Ward 4 ICU The information given before the operation prepared us well for what we were about to see. Andrew was head to toe covered in wire. He was hooked up to about ten machines. He looked pathetic, so small in amongst all these tubes. He looked pink, pink from the operation wash to prevent infection but also a new colour in his face and body no longer the purple-blue. He was calm, fast asleep in spite of the tubes down his throat, the wires, the noise, the beep of monitors, he slept through it all. We didn't know whether to laugh or cry, he looked so helpless. The staff on Ward 4 are very dedicated to their task. A minimum of one nurse per patient, each and every vital statistic is continually monitored and analysed with great expertise. Fluids in and fluids out. Initially Andrew has being given a large quantity of drugs. In order to carry out the operation, Andrew's heart had to be stopped. In order to do this his body temperature was dropped. The first 24-48 hours was crucial hence the number of drugs. The expertise of the staff allows them to carry out a balancing game. Slowly the drugs are reduced, Andrew's response monitored and if positive further reductions made. The drugs have to be withdrawn very controlled. Working twelve hour shifts, the nurses were obviously very well versed in the necessary procedures. Although I spent many hours into the early morning looking on Andrew, most were for my benefit rather than his; the nurses were more than capable. Andrew responded well. I couldn't believe how well a two week old could respond and within 72 hours he was out of Intensive Care and sent back to High Dependency. Ward 10 - High Dependency (2) The second time around High Dependency seemed a breeze. We knew most of the staff and the procedures and it was so good to see familiar surrounding. Although Andrew wasn't out of the woods, for the first time we felt he was making progress and with the hurdle of the operation behind us we were starting to relax. Each day Andrew went from strength to strength, his little personality starting to shine through. He'd lost quite a bit of weight since his birth and was for the first time starting to put weight on. We expected to be in High Dependency at least a week, but within three days we were given the good news that Andrew had recovered enough to be allowed home. Discharge The pleasure putting Andrew in the car for the first time was unbelievable. We couldn't thank the nursing staff enough, but as it had come a little quick we didn't have time to speak to all our new friends. The journey home was long, but pleasurable, and to put Andrew in his cot at home for the first time made us realise what a trauma we'd been through and come out the other end. But it hadn't finished there. We ensured that we adhered to the regime that he was not to have visitors for a fortnight and not allowed out for three weeks. Although these weeks seemed to drag as we became more and more impatient, it was well worth the wait. An infection at this stage would have been crucial and happy to report none came. After care/ongoing support Andrew appears to be going from strength to strength. He's gained much weight and is almost back to the centile as shown in his red book. He's very happy and well natured, particularly now that he has settled down after his initial trauma. He will have to have an annual check up but if all goes well he has a full recovery to look forward to. In this we feel we are the lucky ones and have nothing but thanks and admiration to all the staff at LGI. Practical advice • As a nation we tend to be over polite. Don't hesitate to convey medical concerns you have for yourself or your children. Aiding medical staff to act swiftly helped save Andrew's life. • Be strong for your child, children pick up on positive vibes. • Keep visitors to a minimum. Visitors carry infections, which can be as harmful to your child's recovery. • Contact with the outside can keep you sane, but as mobiles shouldn't be used in the hospital it is often difficult to look after your child whilst constantly fielding questions from concerned friends and family. We used Andrew's Grandma as an external updating contact point, a job she thrived on! • Accommodation is provided by the hospital if you qualify. This is extremely helpful, but be considerate to other families. Full facilities are available in the family accommodation i.e. TV, microwave, washing, cooker, telephone, family room etc. There was nothing worst than returning from the ward only to find half eaten food left where you were about to eat. • Multi-storey parking permits are available for long stay patients, ask the ward clerk. • Take it one day at a time rather than looking at the whole picture which is often too much to take in all at once. Dealing with small bite size chunks are easier to cope with. • Difficult to do, but try to see the funny side of things, it keeps you sane. • Above all, look after yourself (and partner), eat, wash and take breaks away from the bedside regularly. You need to keep yourselves healthy in order to be there when your child needs you.