Purplegerberas's Blog

A rambling collection of my thoughts about life, my children and crafty things

CHD Awareness Week

This week is CHD Awareness week and Samuel’s story has been featured on Stefanie’s blog at When Life Hands You a Broken Heart. Each year to raise awareness Stefanie has a guest post telling a story highlighting the most common birth defect. Today is my turn!
Samuel was born at full term after a good pregnancy and a fantastic labour (never thought I’d say something like that). His older sisters arrival had been more traumatic for me so I was relieved and feeling very relaxed at the arrival of our second child. We had had a quick discharge from hospital so our GP visited us at home the following day and a full newborn examination did not reveal anything unusual.
Our daughter Eloise had been a ‘good’ baby – very content and quiet and we had joked many times that we were not going to be as lucky second time around but surprisingly we were, if not luckier. Samuel was very quiet, rarely cried and slept beautifully. My only complaint with him was his feeding. Although I was bottle feeding it was difficult to get more than an ounce of milk into him at a time. We would have to dedicate an hour to feeding him and it often became a battle to keep him awake or get any milk into him at all.

 

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When he was two weeks old I took him to see our health visitor who quickly dismissed my concerns. Without looking at Samuel she simply said that she sensed some anxiety and I ‘needed to learn not to put my mental health problems onto my baby. I was devastated by this reaction. Was it all my fault? I went home and cried for the first time since he was born. Over the next two weeks I saw the health visitor twice more and again was told there was nothing wrong with him. The last occasion was at baby clinic. I’d gone armed with a list of how much milk Samuel had had over the previous few days. I knew it wasn’t enough. I showed her the list, Samuel was weighed and he had put on weight. I was then told if my list was correct then ‘he wouldn’t be putting on weight would he?’ Again, I was left upset at the realisation that they simply did not believe me. His breathing appeared fast at this appointment and they felt that he had a cold and advised me to see our GP.
We went to the doctors that evening and soon found ourselves on the way to our local hospital. Here they felt he had bronchiolitis and decided to keep him in overnight for observation. We were asked many questions about his feeding. The doctors believed me about the poor quantities but asked repeatedly why I had failed to do anything about it. This added to my upset as I’d spent two weeks raising concerns without anyone taking me seriously and now felt I was being seen as neglectful. Overnight Samuels oxygen saturations deteriorated. They were low and the machine was blamed (they couldn’t possibly be that low). A second machine was tried and that was ‘broken’ as well. A third machine was found and it gave the same low reading. He was started on oxygen but the machine seemed to get the blame rather than realising that his sats were that low.
The ward round the next morning brought a new team of doctors and one thought he heard a slight heart murmur. We were reassured that this was probably nothing. An echo would be arranged and we shouldn’t worry about it. Later that day Samuel went for the echo and the rest is history.

 

It was found that he had critical aortic stenosis, was in severe heart failure and was actually very seriously ill although at that point you wouldn’t really know to look at him. The following hours passed like a traumatic dream. Samuel arrested, he needed to be ventilated but his heart failure was too bad. He was put onto CPAP and we were told that we simply had to hope for the best. They struggled to find an intensive care bed for him. The closest one was in central London 70 miles away. We had had heavy snow that day and during the evening severe fog had set in. A helicopter transfer was not a possibility and London was deemed too far – Samuel was unlikely to survive the journey. Eventually a bed was found at Oxford which was closer. He was transferred there but again we were warned that there was a possibility that he would die on route. It was a slow and difficult journey as the weather was so bad. I still wonder now how I actually managed to drive Steven and I there in one piece. I remember I spent most of the journey wondering how we would afford to pay for his funeral.
He made it there safely though with no drama. The following day he had a balloon valvoplasty and returned from theatre as completely different baby. He cried, he was awake, he smiled, he made noise and he would down a complete bottle of milk in about 15 minutes. He was discharged home on Christmas Day.

 

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Since then we have been lucky. Three years have passed and Samuels health in general has been good. He does need a valve replacement but at present we’re watching and waiting for that time. His heart function isn’t perfect but he copes well with it. Winter and colds present problems but during the summer months he appears completely normal. His heart doesn’t seem to hold him back and he has grown into a very happy and bright little man. My worries about CHD always looming and dominating our lives have gradually faded.

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It took me some time to get used to the idea of Samuels CHD and learning to cope with the uncertainty of the future and also the idea of facing major heart surgery. I had a huge amount of anger over his delayed diagnosis. I had felt dismissed and made to feel at fault over his condition. As a nurse I was horrified at myself that I failed to notice my own child was in severe heart failure. I also know that had he arrested at home his chances of survival would have been almost non existent. Samuel’s development is normal and we are fortunate that he appears to have no long term effects of the heart failure and arrest. I found that there was a lack of information on CHD. Despite being the most common birth defect there is such little awareness. I knew nothing of CHD myself. A trip to my local library revealed three shelves dedicated to books on ADHD but not a single book on CHD existed in the entire county. The early days were very lonely with a struggle to get support close to home. Online forums have helped my sanity many times. A positive aspect of CHD is being part of a caring online heart community.

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In 2012 in the UK the Children’s Heart Federation launched the ‘Think Heart’ campaign [http://www.chfed.org.uk/home/campaigns/thinkheart/]. This is a simple tool aimed at both parents and professionals to raise awareness of the symptoms of an undiagnosed heart defect. Information, leaflet and posters are being distributed to midwives, health visitors and doctors to help bring attention to the commonest birth defect. Parents are also spreading the word at parent groups, amongst friends and giving out leaflets and posters where possible. I’m very supportive of Think Heart and also the pulse oximetry campaign. I believe both would have made a huge difference to Samuel. He may have been diagnosed earlier preventing an arrest and that uncertain hospital transfer. I may have had the courage to have seek a second opinion earlier rather than question myself and my mental health We would have been saved much trauma and anguish. I’ve learnt since that in the UK there has been a huge emphasis on post natal depression for health visitors. I believe that this was at the detriment to my son – his physical illness was interpreted as my mental health problem. Both pulse ox and Think Heart are really simple concepts that increase awareness of CHD to both professionals and parents. For a very small cost outlay lives can be saved, long term disabilities may be prevented and parents can be saved trauma. In the UK pulse ox is being examined with a strong possibility that it will become a standard part of the newborn examination this year. The professionals are doing their part, as parents it is up to us promote, share and shout about Think Heart and place it higher on everyone’s agenda.

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Think Heart

Next week is Children’s Heart Week and the Children’s Heart Federation are running a series of events to increase awareness of congenital heart defects.  They are also going to promote the ‘Think Heart’ campaign which encourages both parents and professionals to be more aware of the possibility of a congenital heart defect in the first weeks after birth. Roughly half the children born with a heart defect will be sent home without a diagnosis.

Think Heart provides an acronym to help raise awareness of the symptoms of an undignosed heart defect

Heart rate – too fast or slow? (normally 100 to 160 beats per minute)

Energy & Feeding – sleepy, quiet, floppy, too tired to feed or falling asleep during feeds?

Arterial Saturation (oxygen levels) – not enough oxygen in the blood? (normal oxygen saturations 95-100%)
and Appearance: a pale, waxy, dusky, blue, purple, mottled or grey colour (not enough red blood)

Respiration – breathing too fast or slow? (normally 40-60 breaths per minute)

Temperature – cold to touch – particularly hands and feet?

More information at Tiny Tickers

In hindsight looking at the symptoms, Samuel was showing us that he was clearly having problems. I’d approached my health visitor on a number of occasions as I was concerned and each time was told that I had anxiety issues and was putting my problems onto my baby. I think had I known more about the symptoms of a heart defect I would have had the  courage to seek alternative help much sooner.  By the time he was diagnosed aged 4 weeks, he was in severe heart failure and had a cardiac arrest. We know that we are lucky that he arrested in hospital, had this happened at home it is likely that he would not have survived.  We are also lucky that Samuel has suffered no long term ill effects from that undiagnosed period.

This photo sums up our first 4 weeks with Samuel – constantly asleep…..

And immediately after his valvoplasty he was a totally different child….

On 14th May the Children’s Heart Federation is holding a workshop in London to discuss the Think Heart campaign and also the use of pulse oximetry testing at birth (something else I feel would have prevented us going through a lot of trauma).  Following that is a parliamentary reception to raise awareness amongst MPs of the importance of early diagnosis of heart defects.

I’m attending both and looking forward to a trip to London on my own! It’ll also be strange attending a healthcare meeting wearing my parent hat and not my continence manager one. I’m also looking forward to going inside the Houses of Parliament – my inner political geek is thrilled. Sadly though no photos can be taken inside – what happens if I bump into Andrew Marr or Nick Robinson?!

My main feeling with both Think Heart and pulse oximetry is that they are not rocket science. They are simple, cheap, accessible and effective ways of detecting heart defects at a crucial stage.  I strongly believe that both would have made a huge difference to Samuel’s condition. It would not have reduced the need for surgery but it would have saved us all the trauma of him being critically ill and coming so close to losing him.

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Keeping the positive momentum going

Back to reality and back to work on Wednesday and so far so good.

I’ve tried really hard to keep positive and not get caught up and dragged down in others doom and gloom. I’m lucky that my secretary is on the same positivity drive and we have adopted the new office mantra of ‘What would the Dalai Lama do?’ to refocus ourselves on positive, calming thoughts (success of this varies!)

 

So the good things from the week –

Samuel is going to sleep much quicker. No protests or screaming tonight. He played in his room for a bit then put himself into bed after 20 minutes. He’s also sleeping until 7am most mornings. The sleep is making us both feel more human and better natured.

Today we received the clinic letter from Samuel’s last hospital appointment. We had been concerned about his breathing and he hasn’t been himself since October. His consultant feels that the breathing problems are not related to his heart and he probably is just suffering from repeated colds and chest infections. The letter explained that a chest xray shows resolving infection that doesn’t need further treatment. Cardiac wise he remains stable with no real change in his overall condition since his last review a year ago. He still has mild stenosis and regurgitation and some hypertrophy but this is as they had previously reported. He has another appointment in two months time but this is mainly to review his breathing and we were told that he would probably not have an echo then.

Had a really good day out of the office yesterday to concentrate on fellowship things. Have kept up with my journalling. I came to the conclusion that I have a real interest in coaching. I’d like coaching for myself to aid my development and to keep my motivation up. I also think it is a good way to help me deal with my team and help them to develop. I usually take on everyone else’s problems or queries at work and by adopting a coaching mentality I can reduce some of that workload for myself, delegate and aid staff development in the process – win win!

I spent yesterday searching for a coach and trying to find someone suitable. I have received money as part of the fellowship so had intended using this to pay for coaching. Today I had a conference call with the programme leader who has suggested she will contact our regional health authority as they will have coaches that they use and ask someone to contact me to arrange this. I will not have to pay for this meaning I can put more money into my service and team development.

Yesterday I also met with someone I had approached to be my mentor and clinical supervisor. I had sent a cheeky email asking for her to suggest potential mentors to me in the hope that she would offer to do it herself. The plan worked 🙂 The meeting went well and I have really good feelings about it. We discussed many things and our opinions are the same on a number of key issues. She has given me things to work on and suggested further sources of help. I also discussed with her about a proposed restructure of our trust and that I feel this is a threat to our service. She explained it in a different way to how I had viewed it initially. With a different perspective I am now confident that we can use this proposal to our advantage and strengthen our role.

Operation Declutter continues at home. My shredder is still keeping pace. I’ve ordered the phone docking station and I’m longingly looking at the Ikea website for storage for my kitchen command centre. Today I introduced the 15 minute rule on my work desk (yes, I am just as bad at work). One drawer cleared. My filing cabinet will take a long long time to organise.

 

So a good week. I’m concentrating on my little goals and using small steps to work towards the bigger objectives. I need to keep focus on this as its working well. Any other suggestions on keeping a positive momentum will be gratefully received!

 

 

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Pulse oximetry screening

I have a new bee in my bonnet for congential heart defects.

At the moment not all heart defects are detected. Some are found during antenatal screening but not all.  At birth all babies are examined by a doctor and a check of the heart is part of this but again, not all heart problems are picked up by this.

Samuel was one of the missed babies. Despite being seen by several people during the first weeks of his life his heart defect was not diagnosed until he was seriously ill. He was admitted with breathing problems and had been in hospital overnight, being treated for a chest infection when his heart murmur was first heard. The ‘chest infection’ turned out to be severe heart failure.  A short time later he had a cardiac arrest and we went through the hell of watching him being resuscitated and then given the news that he needed to be ventilated but was actually too ill to be ventilated at that time.

We are the lucky ones. Samuel is now very well and has a normal healthy life. Congenital heart defects are the commonest form of birth defect (1 in 133 births) and one of the leading causes of childhood death.

A recent study has shown that there is a simple, cheap and effective way of increasing the detection rates of congenital heart defects in newborn babies. By checking the oxygen saturation of a baby as part of their newborn health check, the detection rate increased to 92%. This means that problems are detected earlier and treatment can start immediately before heart failure, cardiac arrest or even death can happen.

Presently, all newborns are routinely tested for deafness – this affects 1 in 1,000. They have a blood test to screen for PKU and MCADD – each affecting 1 in 10,000. A range of other conditions, all rarer than heart defects are screened.

Pulse oximetry is quick, simple, painless, and cheap, using equipment that is already widely available within healthcare settings. For me it is a simple decision and by introducing this as a routine part of the screening programme lives could be saved and many babies could be diagnosed and treated before becoming seriously ill.

So I have created a petition, asking the Department of Health to include pulse oximetry testing as part of the newborn screening programme

Please sign my petition

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Six months on

It’s been 6 months this week since Samuel’s aortic stenosis was diagnosed and he had his cardiac catheter. Thinking back to that week I really feel we’ve all come a long way and emerged the other side of the big scary cloud we were stuck under.

There was a time when I felt his heart defect heavily weighed on my mind and I never thought I would be able to ‘forget’ it and get on with my life. It was a very lonely time but I’m genuinely in a much happier place now. Samuel’s health is very good which has helped. The uncertainty of the future is still there but I can put it in perspective and its at the back of my mind. I know his valve replacement will be a difficult time for us but I am able to forget about that anxiety for now and will cross that bridge when we need to.

I’ve met many new people and been very thankful that the heart parent community on the internet is as strong and big as it is. Whatever the anxiety – however big or small – there has always been someone who has been through the same and can offer some help.

I’m now busy making plans for the future and feel clear about the direction I’m going in – and I will get there regardless of what Samuel’s aortic valve decides to throw at us!

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Brown Envelopes

Why do brown envelopes always mean something a bit ominous? I had a really good day yesterday then came home to find the post waiting. In it was the GP letter from Samuel’s outpatients appointment two weeks ago.

It said that the murmur has changed since his last appointment – its louder and the valve pressure has also deteriorated. The stenosis is now classed as moderate compared to mild before. Although this in itself isn’t bad it’s bothered me that if it has changed this much in three months, how long can we realistically go without him needing further treatment? I think deep down I was hoping that he would tick along with no changes for a good few years (ever the optimist!) I don’t think I really expected a negative change within 3 months. I think I also had convinced myself that I was comfortable with this whole situation and this letter has just demonstrated to me that I’m not.

It also made reference to his ‘poor start’ in life and also said considering the starting situation he has done very very well – better than they had expected. Although this is a really positive aspect it just reminded me of how bad things were – even the doctors didn’t think he’d do that well. It’s another reminder of how uncomfortable I am with things.

So, lets be positive. Samuel had another nursery visit this morning. It went very well and he didn’t cry so I’m feeling better about that. Our GP has started him on gaviscon and it seems to have helped – he is happier and more settled when feeding. I bumped into the health visitor last week and managed a conversation with her without getting upset. She tried again to say that Samuel is finds life difficult because I do. Day to day I don’t feel I find things difficult – despite the letter I am feeling very happy at the moment. I was able to just smile and say nothing and let her continue thinking I am some Munchausen by proxy mentalist. I laughed about it with Steven when I got home. A couple of months ago I would have been crying and worrying about what she thinks of me so I see this as progress!

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