A couple of hours after Asher was born, a mark appeared on his face …

… Doctors told Asher’s parents Allison and Dean it was probably the result of the traumatic birth and that it would fade quickly. IT DID NOT.

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After three days, Allison and Dean took Asher back to the hospital. The doctors gave a long list of possible causes but did not seem particularly worried nor could they provide the concerned parents with a definitive answer.

In the weeks that followed, Allison and Dean became increasingly worried as Asher’s ‘bruise’ did not simply go away. They did not realise that it was life-threatening and that a malformation was growing undetected, hidden under Asher’s otherwise beautiful pale skin.

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Asher had a venous malformation

You may have seen this and thought of it as a ‘port wine stain’ on a person’s skin – it can also be life threatening as is the case in Asher.

When it is not on the surface, it can form within the body. If a haemangioma blocks an eye, it can threaten the development of the eye and cause blindness. Abnormal blood vessels can also develop in the brain or cause abnormalities of the heart. Nerve and spinal damage can also occur. The disease is most often seen in the head and neck and if present in the mouth or airways, it can be fatal.

After scans, the doctors found that the venous malformation involved large areas of Asher’s airway and had spread to areas near his brain. This meant that Asher had to begin the only therapy available to doctors – sclerotherapy. This kind of therapy uses beta-blockers (re-purposed from use in heart disease). They have to be injected internally into the veins around Asher’s airways as this is where most of his malformation comes from.
Unfortunately, with the risk of swelling, this means that Asher has to be put onto a ventilator machine to aid his breathing while multiple injections are performed. This causes another problem – when it was first performed at just 12 weeks, Asher coughed up the ventilator tube. So now, he has to have a general anaesthetic to stop this from happening.
Because he is ventilated, Asher has to be admitted to the Intensive Care Unit (ICU) for his treatment every 3 months. If he is lucky, he is admitted for only a couple of days but there are often complications and he spends a week in ICU. Asher is 5 now and his family feel like they have lived a good part of their life in hospital. It has become their routine. They cook and eat there – they even have a car fridge to keep their supplies.

Allison says the worst part of this treatment is “the silent tears”. Because Asher is on a ventilator, he cannot make any noise but tears still roll down his face from the pain and discomfort.

What the future looks like for Asher

As Dean says, “If it was leukaemia, I could deal with it – we would know what lay ahead and the treatment options available.” It is the unknown and the constant need for hospitalisation for the rest of his life which is so hard to deal with for Asher and his family.