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Defibrillator to be fitted to girl despite parents’ reluctance

Doctors should fit a seven year-old girl with a defibrillator despite the reluctance of her parents, the High Court has ruled.

In Re AA, the girl in question had been healthy and free from heart problems until February this year. She went to bed as normal on February 5, but then woke up crying in the early hours. Her mother found her “breathing in an unusual way”. She then suddenly stopped breathing altogether. Her older brother begin cardiopulmonary resuscitation when he found no pulse.

Paramedics arrived and found that the girl’s heart rhythm had become erratic and life-threatening, before ceasing altogether. The medics continued resuscitation efforts for as long as 35 minutes. AA was transferred to hospital where her heart finally returned to normal.

Initially AA was unresponsive. Doctors believed she had suffered brain damage and warned  her parents that she might not survive. But, as High Court Mr Justice Bodey explained:

“… AA has made a remarkable recovery and can now talk, eat and walk without support. She has, however, in the opinion of Dr. P, consultant paediatric neurologist, suffered brain damage which is still seen in her difficulty with some fine motor movements, like using a pen and using cutlery and in speaking fully fluently.”

The girl would need continuing rehabilitation and therapy after her discharge from hospital, but she would be able to attend school and lead a relatively normal life. In the judge’s words:

“So it sounds as though, happily, AA has made pretty much as good a recovery as could ever have been hoped for, given the length of time during which she was not breathing normally or at all, and much better than the experts’ experience had told them was probable.”

A paediatric cardiologist treating AA concluded that the girl most likely had ‘primary arrhythmia syndrome’ – abnormal electrical activity in her heart.

AA has suffered no further heart problems during her time in hospital but doctors believe a recurrence at some point is likely.

Any recurrence would most likely prove fatal or cause major brain damage, doctors believed. The natural flexibility of a young child’s brain would no longer provide a protective effect.

The cardiologist treating AA recommended the fitting of an ‘implantable cardiac defibrillator’ (ICD), a small device inserted beneath the clavicle or collarbonewhich monitors the person’s heart and administers a therapeutic shock if it detects the onset of abnormal rhythms.

There were a number of risks and problems associated with an ICD, he acknowledged. These included the risk of infection and the application of unnecessary shocks; as well as the possibility of scarring and psychological and emotional issues, for which counselling would be available. But ICDs were standard treatment for people with AA’s condition.

The NHS Trust applied for permission to fit the ICD. Mr Justice Bodey explained:

“The parents… are opposed to this procedure and have not felt willing or able to give their consent, hence this application to the Family Division of the High Court exercising its inherent jurisdiction [legal authority].”

The Judge considered the likely effects on AA of fitting the ICD, and concluded that it would not present her with an unbearable burden.

“There would be a psychological element of having an ICD, but it would not act as a constant reminder, like a wearable vest would, of the risk of a cardiac attack. It would not need explanations to peers, friends, teachers and others; and it would eliminate the risk of her being singled out as wearing an unusual garment. The ICD would enable AA to go swimming, to take baths and showers, to go sunbathing or to wear summer clothing, in a way that a wearable defibrillator vest would not permit.”

Read the ruling here.

The blog team at Stowe is a group of writers based across our family law offices who share their advice on the wellbeing and emotional aspects of divorce or separation from personal experience. As well as pieces from our family law solicitors, guest contributors also regularly contribute to share their knowledge.

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  1. Stitchedup says:

    My sister had one fitted recently, her heart was stopping in her sleep. Yes it is noticeable if she wears a low neck top but she’s alive. These things will get smaller and more reliable as technology improves, this young girl has the rest of her life ahead of her, by the time she’s an adult the defib may not be noticeable or other less intrusive treatments may be available. I may need one myself eventually, we have a history of cardiomyopathy in my family
    .. Lost my father to it.

    • Stitchedup says:

      Re the brain damage, it sounds as if the little girl is Making excellent progress… Young brains can evolve to compensate for damage. Not so easy as you get older but the human body can still do remarkable things. Best to do your best to avoid any possibility of damage as she gets older…. On the face of it, and i don’t know the full details, the judge made a good call imho.

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