Keana's story

Keana was born at 31 weeks and was a very sick child, Keana was diagnosed with Truncus Arteriosus Type II. Neither my husband nor I understood fully what this meant and remained in a bubble for quite some time. With my theatre nursing background I really could not make head or tail of what to expect medically; only what to expect surgically. We both felt it was such a lonely road and was not sure who to discuss it with. This is when we met the paediatric liaison team; who did not bombard us with information, but were always there for advice, they kept us up to date and well informed at all times, any meetings we had with the Alison Hayes (Cardiologist) ; they were there and any meetings with Ash Pawadi (Cardiac Consultant Surgeon), the Cardiac liaison nurse was there.

This is Keana at 5 weeks old, she had only just been diagnosed with the congenital heart defect Truncus Arteriosus Type II

We all remember the day of Keanas’ first operation, how sick Keana was post-operatively and this was the most traumatic time for us, there was so much support from the ward 32 staff, theatre staff and PICU staff, everyone was routing for us, Oh My God, this child was sick, at one stage we were told that Keana may not make it; but she proved us all wrong.

This is Keana 1st day post-operatively

A week before Christmas 2000, we took Keana home and locked ourselves away; only close family and friends could contact us or visit, it was such a precious time for both of us.

Keana at 6 months of age, and 4 months post-operative

Then at 18 months old, it was found that Keana required further surgery due to the narrowing of her conduit valve, this journey was traumatic, but because we knew what to expect, it appeared to be easier and we did not feel so isolated or alone.

Keana a couple of weeks post-operative

Keana did not require any further surgery until she was 7 ½ years old, by then, as a family we agreed not to let her condition get in the way of living life to the full. We had our family trips; ensuring that all avenues were covered. Keana is quite well travelled, and enjoys all her trips and holidays.

Keana 7 months post-operative, enjoying herself at Sea World in Florida

This is Keana a year later at Animal Kingdom in Florida torturing the natives of the theme park.

Keana recently underwent surgery for a valve replacement and did very well, remained in hospital for 3 weeks. It was found at her check-up that she had considerable narrowing of her conduit valve and needed to be replaced urgently; this was done in 2012.

This is Keana 2 weeks post-surgery, and as you can see from that gorgeous smile, she is very happy to be home and enjoying life.

Keana is now over 5 foot tall and is a good weight. She enjoys school.

As Keana’s parents, we have been through all sorts of turmoil and there has always been a listening ear from the staff within various teams; we can never thank those guys for this, it really has been appreciated.

Keana has come a long way from a babe; and remains a fighter, she does not walk away from any challenge and she asks many questions. She most certainly has broken the mould as she is far from being a failure to thrive and difficult to feed – the fridge cries out for pain as she is always opening it (constantly wanting food).

Keana is the bubbliest child ever who thoroughly enjoys life and socialises well. She has no fear of anything and will always challenge, she finds all her hospital events tedious; not because of the staff, but because it breaks her routine and gets in the way of things!!! Keana is an absolute delight who enjoys life to the full.

We, as a family are more than happy for Keana’s pictures to be shown to any of the parents, who are going to encounter this long journey, and we are more than happy to speak to any parents who just want some hope; Keana IS hope, and we hope that this will inspire any parent to retain their faith.

We would like this letter to be shown to all the staff in Paediatric Intensive care, Outpatients, Theatres and Ward 32, just to prove to them all; it is worth it, to keep up the good work, and to remember that they are valued; even if it does not seem so some times. There are children out there who would not be here today if it were not for all the team work.

Thank You


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