Liam was born in September 1988, and weighed in at 7lbs 14ozs. He was very slow to feed and what you did manage to get down him soon ended up everywhere else! He just failed to thrive and was floppy even at six months. He was in and out of the local hospital due to his ‘feeding problems’ right up to his first Christmas, which he spent on the ward. He finally came home on soya milk and semi-solids to try and put some weight on him.
Finally after much forwards and backwards and branding us ‘over fussy parents’ the paediatrician detected a heart murmur….”nothing to worry about …….” he said. Our baby was referred to the Birmingham Children’s Hospital’s cardiac unit. After that things moved very quickly….
Dr Eric Silove sent him for an ECG and ECHO which seemed to take forever. Finally there was just us and the cleaner left in the heart unit as everyone else had gone home…
Dr Silove pulled no punches and said ‘Liam has a rare abnormality in his heart only usually found in adults who have had rheumatic fever – he has Mitral Stenosis. He went on to tell us that if nothing was done within the next six to eight weeks Liam’s life would be in great danger.
Finally we arrived into the world of the cardiac unit on a bleak August day. We met with the surgeon Mr Sethia who gave us a 65 per cent chance of Liam pulling
through. As it was Mr Sethia didn’t get to perform his operation as after Liam was starved all day, it was postponed due to an ‘unofficial strike’ in theatre.
This proved to be a good thing for Liam in the end because we were then transferred to another surgeon Mr Bill Brawn. He gave Liam’s chances of 95% (so confident) Finally Liam went for his first operation (Mitral Valvotomy) just before his first birthday on the 7th September….all seemed to go well.
Liam then started to vomit and showed signs of heart failure, he had an x-ray and echo which confirmed fluid around his heart. He was kept in hospital to try and stabilise his weight, and on 18 October went back down to theatre for the second time to try and stretch the valve cusps (Valvotomy). He came back to ITU in a critical state and we were told that the staff were on stand by, as he would have to return to theatre again next morning. Liam was packed in ice over night, the surgeon called throughout the night.
Next morning Liam returned to theatre for the third time and was finally fitted with a prosthetic valve – a St Jude valve. Mr Brawn was able to insert a size 21mm as Liam’s heart had become so enlarged. Liam spent a week in the intensive care unit and finally after nine and a half weeks we returned back home….
Our life with warfarin had begun … levels too high, levels too low … be careful, clinic every other day. There was no information anywhere for us to look at … So we contacted universities, pharmacists, and the British Heart Foundation (BHF) and between us all produced an information booklet about looking after children who are on warfarin. These are available from the BHF.
Apart from not being able to take part in contact sports due to this medication, Liam has led an active life with things he can do. Throughout his time in primary school he had a nursery nurse who kept an eye on him within the classroom and at playtimes and dinnertimes. He has a medical statement even now he is in year 10 at secondary school, the care obviously changes as they get older as they take on the responsibility themselves more.
Apart from chest infections and a bout of pneumonia when he was five, and a catheter when he was nine, Liam has had out patients check ups each year. In July 2003 Dr Oliver Stumper decided it was time to plan for Liam to go in to BCH for his valve to be changed for a larger one….
We arrived on Ward 12 at 11.45 am on 14 March (just in time for dinner), pressed the buzzer to enter the ward and heard a voice say..”I’m not letting you in here”. It was the voice of the sister, Debbie Withey, who nursed Liam when he was in the old hospital for nine and a half weeks. After catching up on what we had all been up to, Liam had his echo, ECG, blood tests etc, and we settled in. Mr Barron the surgeon came to speak to us all to explain what would happen, and told us Liam was first on the list next morning……
Walk around the shops
Next morning dressed in a flattering gown, Liam walked round to the operating suite, and we stayed with him while he was given the anaesthetic, gave him a kiss and walked off trying hard to keep the tears from falling, not very successfully … Graham and I had a walk around the shops for a couple of hours and then returned to wait in the hospital.
Liam was in theatre for six hours. We finally got called to see him in intensive care. Liam looked so huge compared to the other patients, he just about fit on the bed … Liam was kept paralysed so his body could rest and also because his gases were not right, so they had to get that right before they began to wake him … eventually at about 2.30 in the morning they reduced the sedation and Liam’s
breathing tube was removed.
Before this Liam had been asking by writing letters on our hands how things had gone, and later when he could talk said while he was paralysed he could hear us talking to him, but couldn’t move, even though he was trying. At about 1.00pm the next day Liam was transferred to the High Dependency Unit (HDU) up on Ward 12. This unit had only opened the day before so it was all brand new! Liam made steady progress and on the Friday went to a room on the ward (still attached to the heparin). he seemed quite well and in good spirits and had visitors over the weekend which included his best friend Rob.
Monday night after our good friends Ann and Trevor had been, I got the camp bed set up at the side of Liam’s bed, and we both settled down for the night. Liam tossed and turned, and eventually at about 3.00 am said he had a pain in his neck, (you take notice if Liam says he has a pain because he never complains) so I went to tell the nurse who came and looked at him, and tried to alter his pillows in case it was that.
After 15 minutes Liam said his chest hurt. Off I went again to fetch the nurse, she gave him some codeine and paracetamol, Liam then said he felt sick so we got the
sick bowl, then he wanted the toilet, so I unplugged his heparin and got him there where he was promptly sick. We got Liam settled back in bed and the nurse by this
time had gone to bleep the doctor … who took ages to arrive, by which time Sister Withey was on the case and things moved fast … monitors where bought in,an ECG was done, cannulas were attached and Liam was moved back to HDU.
The surgical team arrived, and an echo was done which showed Liam’s heart was being squashed by fluid, and he had a very large clot in his right atrium. Things moved extremely quickly. Graham first of all burst into tears, then he pulled himself together and it was my turn.
Liam was given morphine to dull the pain and he settled a bit more. Dr Andrew Clarke who was part of the surgical team came and explained what they were going to do and that they were getting ready to take Liam straight into theatre. While we waited consultants, registrars, cardiologists all came to look at Liam. It was so scary.
We helped to push Liam’s drip stand down to the operating suite. Liam didn’t go into the anaesthetic room – he went straight into theatre so we had to leave him at the door, and all he was saying was “hurry up, I want this pain to go”.
Pink not grey
Liam was gone for just over two hours. Dr Clarke came to see us and told us he had done an evacuation of tamponade and removed a very large clot from his right atrium…we couldn’t thank him and the team enough. We were told by so many if Liam had not been in the hospital when this happened he would not be here now … Liam did not have to go back to ITU and instead we went to collect him and he went back on HDU. Straight away you could see the difference – his colour was pink instead of the grey he was before.
Liam was not the same boy he was before, he wouldn’t be left alone, one of us had to stay with him. I could understand why he felt like that it had scared us as well. Liam had a chest drain in for two days and then the echo showed that it was okay for it to be removed. Liam said it was like a hose pipe! So did the nurses… Liam was very apprehensive though about having his neck line out as he linked this with what happened before. (He had the neck line out last of all before the chest pain started).
Victor who was a happy doctor reassured Liam that he would do echo’s to show that things were okay, which thankfully they were. All the doctors and nurses were wonderful with Liam and laughed and joked with him, especially about his team Aston Villa..
Finally on the 27 March we were off home! At last a proper bed to sleep in for me that is!) We had to return to the ward next day as his INR was still not right. We arrived next morning and Nurse Jenice did Liam’s test which was 2.5 again – this meant that Liam had to have an injection of Kexlan (I think that’s how you spell it) in his leg again (he’d had one the day before as well). Finally after another three hours of waiting around for haematologists to make a decision on dosage and intervention of Dr Oliver Stumper (Liam’s cardiologist) we were off again. Liam has had to go to the hospital near home for his INR checks and to the doctors to have his dressings changed on his chest where his drains were as they have taken a while to heal.
Liam will return to BCH to see Dr Stumper on the 13th May, until then he will receive home tuition for his schooling. Liam is doing very well at school, and recently three principal’s distinctions were forwarded to him at home for Mathematics, Science and German. He recently got A* and A’s in his mock exams. We are so very proud of him for all he has achieved so far in his life and hope it continues as he strives to become a vet in the future.
Liam left school and we were so proud of him he passed all his exams with A’s and B’s. Liam decided to go to college at King Edwards in Stourbridge but after a while decided that he really didn’t like it. Laim left after the first year and decided to do a modern apprenticeship in accounts as he is really good with numbers. At this point you can see he had changed his mind about being a vet!
Liam got a job with a large company in credit control and settled in. Liam stayed with this firm for over three years doing really well and attending college on day release.
Liam by now had met Kelly and after a short time realised that they had something special. After a year they got married and went on honeymoon to Egypt.
Liam and Kelly will also become parents later this year in November and we are so happy for them. My CHD warrior has come so far in his life and overcome so much, but he has done it and we couldn’t be more proud
Wrote by Donna Hacket
Donna Louise Hackett has kindly given CHD-UK permission to use the photographs on this page.
ECG: short for electrocardiogram – for measuring the electrical activity of the heart
Echo: short for echocardiogram – an image of the heart created by using high frequency sound waves.
Mitral stenosis: the Mitral Valve in the heart opens to let oxygenated blood pass into the left ventricle, and then closes as it is pumped into the aorta and so around the body. Stenosis means that it is narrow, and therefore not allowing enough blood through, and causing a backflow to the lungs.
ITU: Intensive Therapy Unit
Heparin: a drug given directly into a vein which thins the blood when there is a danger of clotting (an anticoagulant)
INR: International Normalisation Ratio, a test of how fast blood clots – 1 equals normal clotting, so an INR of 2.5 means that blood is taking 2.5 times as long to clot as normal.