Purplegerberas's Blog

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

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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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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