Benji's story

Benji was born premature and suffers from a number of medical conditions. His mum Zoe tell his story…

Benji enjoys the sensory tower at the AlexBack in 2013 Rockinghorse committed to the ongoing funding of a family counselling service for the High Dependency Unit (HDU) at the Royal Alexandra Children's Hospital (the Alex) in Brighton. This much-needed service provides emotional support to parents with a child in hospital long-term. Here, Benj’is mum Zoe explains how important the counselling is to her and the difference it has made to her family:

“Benjamin (Benji) was born in February 2011 at only 34 weeks. He weighed just 3lbs and was immediately transferred to the Trevor Mann Baby Unit (TMBU) where doctors diagnosed him with Downs Syndrome and Tracheoesophageal Fistula Oesophageal Atresia (TOF-OA). This complex condition is where the oesophagus is attached to the windpipe and lungs instead of to the stomach.

At just one day old, Benji had his first operation to correct the problem. Unfortunately, severe scarring in his airway led him to develop life-threatening breathing problems and he needed a Tracheostomy, an operation to open a direct airway into his windpipe. Several operations later, Benji was transferred to the High Dependency Unit (HDU) at the Alex.

Just before Benji's first Christmas, his trachea tube became detached and he stopped breathing, requiring resuscitation to save his life. Doctors realised Benji was going to need nurse-led, medical care 24 hours a day, even when he would eventually be allowed home. During this time my husband Simon and I found it hard to stay positive. We felt we were on a very long and emotional rollercoaster of worry and stress and we simply wanted to bring Benji home to be together as a family, with his big sister Ivy (aged 4). Then we met the parent counsellor at the Alex and things immediately felt a lot better.

Parent counselling for those with children treated on HDU is a crucial service because, although we have had lots of support from lots of people, most of my friends and family do not have the shared experience of having a child in hospital long-term. To be able to talk to someone without worrying about what they are going to think or say, or worrying whether they understand what you are trying to say, is just really valuable.

Children requiring complex care can have a profound effect on their families. When looking after a child like Benji and trying to juggle the needs of the rest of the family, you are not necessarily in tune with your own emotions. You are just simply too busy getting through the day and hoping your child will get better. Simon and I have benefitted enormously from speaking with the HDU counsellor confidentially.  Although you do talk to other parents on HDU, you are all a bit fragile and you all feel like bursting into tears. They are also worrying about their own poorly child so, as a group, you become more like each other’s moral support. The counsellor is there to speak to honestly and openly, without fear of upsetting anyone.

We are so pleased Rockinghorse is funding the ongoing parent counselling for all parents with children on HDU. Speaking openly and honestly to the counsellor has helped me to function and I cannot emphasise how important this service is to ensure parents are looked after and families can stay together.” 

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We’ve been supporting sick children for 50 years
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45,000
Young patients are treated at the Alex every year
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600
Babies are treated at the TMBU every year
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250
Babies are treated at SCBU every year
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