Baby Thomas’s Story – Hope against the odds

However much you plan, however much you prepare, life still has a habit of creating its own path…

Eight minute labour

 

There’s a brief crack, a nerve paralysed, electrified, a tear – just the one…

For a fleeting second the wonderfully upbeat, doggedly strong Gemma lets slip the pain, the worry, the fear. Fear of the unknown, of change, fear of a child’s fragility and vulnerability.

 

He may have been a week overdue but once baby Thomas Samuel Gibson decided to make his way into the world he didn’t hang around. ‘No sooner had I sent a text to the family saying Gemma’s waters had broken than Thomas had made his way into the world.’ Announced proud dad Dave.

 

A rapid, eight-minute labour wasn’t the only surprise; following a 20 week scan Gemma and Dave had been told the latest addition to their family would be a girl – but here was Thomas, a beautiful, beaming, seven pound baby boy, loved unconditionally by his proud parents.

 

Swollen feet, swift diagnosis

 

 Dave and Gemma were in the delivery room, proudly cuddling their newborn, when a nurse advised she was concerned about Thomas’s swollen feet.

Now there was the fear, that something might be wrong, something out of our control

‘We’d no idea of its significance but within minutes the paediatrician arrived and rather than offer reassurance, we were hit by a thundering bolt. It’s not his feet but his small head that is of concern. Here was our lovely little man – looking very like his brother at birth – we’d had the shock of the rapid labour, the surprise arrival of a boy but nothing could prepare us for the drama ahead.’

 

Microcephaly Lymphedema Chorioretinal Dysplasia

Radio silence

Microcephaly Lymphedema Chorioretinal Dysplasia

Everyone expects births to be joyous occasions but this was too much to comprehend.  Family knew of the birth but, shocked, confused, scared and numb, Gemma and Dave couldn’t conjure any words for friends. With comm’s off all their energies were channelled and focussed on baby Thomas.

The words used, at that stage incomprehensible medical jargon, are now something Thomas’s parents are well-versed in. Thomas has Microcephaly Lymphedema Chorioretinal dysplasia. Microcephaly meaning small head – severe in Thomas’s cases (as his is visual impairment), his brain has matured but not as much as most;  Lymphedema describing the swollen limbs; Chorioretinal dysplasia the term for his visual impairment. A combination thought to be caused by a mutation of the KIF11 gene and, so rare, there are only a handful of cases in the world.

Green vomit signals danger

Life threatening signs, life-saving surgery

Gemma and Dave had barely had time to comprehend the doctor’s words, a diagnosis of Microcephaly Lymphedema, when baby Thomas vomited – just the once. The vomit, coloured green, indicated a potentially life-threatening bowel blockage. Immediate action was needed. Not yet a day old, Thomas was scanned, operated on and admitted to intensive care.

Caring and coping

‘As a mother you’re just too close’

Gemma admits that even now she finds it difficult; ‘It was hard to take in. I think you shut out some of what you are being told, perhaps as a way of coping.’

Fortunately Dave accompanies Gemma on key hospital visits, he makes notes, asks questions, remembers what they’ve been told. He researches like mad, ‘It’s so important we keep on top of things, give Thomas the very best life chances.’

An education for all

Offering hope to parents like us

After an initial prognosis that suggested Thomas’s life would be very short indeed, being told by the paediatrician to plan for Thomas’s education and for school was a huge boost. 

Gemma and Dave don’t yet know the full extent of Thomas’s abilities nor how his disabilities will impact. They know they are profound and multiple. Importantly though they have been given permission to look forward.  ‘That’s huge.’ Said Gemma adding , ‘We’ve told friends and acquaintances but we want to go beyond that. We’re keen to share our story. We want to offer hope to other parents like us. Not only do we want the public to know more about Thomas’s condition but we hope that by telling our story, parents who are dealt a hand they never anticipated will be helped too.’

This sensory tunnel was provided by The RSBF. Not only does Thomas enjoy his sensory tunnel but it provides great therapy for his very limited vision. Importantly, his enthusiastic responses to sensory equipment offer hope that his vision may be improving.

Future hope

Sensory stimulation

Seeing is believing

The future is uncertain but Gemma, Dave plus family, friends and supporters plan to do all they can to help baby Thomas. Following medical advice they are busy creating a sensory room – potentially the first of many changes and adaptations to their home. Equipment is expensive but friends and family are rallying; helping raise the funds needed and The RSBF has stepped in to support too. Gemma and Dave are being signposted to, and beginning to explore sources of support available so Thomas can get the timely support and stimulation required to help meet his needs.

Changing stares to stars

‘Sometimes people stare, that can be hard, hurtful even’

Gemma and Dave haven’t changed, ‘It’s normal jogging for us. ‘ Said Dave, but it’s clear they’re already feeling the impact of others by sharing their story they are hoping to change stares – which can be so hurtful – into stars. ‘It’s our hope that we can harness the curiosity to create an environment of tolerance of knowledge, understanding and compassion.’

Swift and sure support from The Corps

‘I love my job’

Dave is a serving soldier in The Royal Signals ‘I love my job, I’m a lifer, The Commanding Officer and my unit have been exceptionally supportive. I do need time off and The Corps wholeheartedly support that and more, making sure we’re all okay.’

Families like Dave’s have the support of The Royal Signals Benevolent Fund (RSBF) too. Indeed Dave’s unit are involved in fundraising for The RSBF, so The RSBF can continue its work to help families like Dave and Gemma and so that Gemma and Dave can raise awareness of Baby Thomas’s rare condition. The RSBF has recently purchased a sensory tunnel for Baby Thomas and the family know that additional help and support is there if it’s needed.

How the RSBF helps signallers & their families

‘Approx £1 million granted to those in need in the last three years’

Swift and sure support  for The Corps – Together we can do more

The RSBF assists serving and retired Royal Signals soldiers and their dependant families – who need extra help or support. We’re a grant giving Charity (case work is undertaken independently by other charities) and have granted close to £1 million in the last three years.

When unexpected illnesses have hit The RSBF has helped soldiers and families by paying for things such as additional wrap-round child-care and hospital car-parking costs as well as essential equipment, including life-saving portable stomach pumps and mobility aids. We’ve funded sensory and other equipment too, so that babies like Thomas can be given the best life-chances and parents like Gemma and Dave can look forward.

Together we can do more

We rely on fundraisers, donations and legacies to help us, help those like Baby Thomas.

With your continued and generous support we can continue to be there, helping those who need it, when they need it.

Get in Touch

Pictured above is Sandra Hutchinson (RSTL Communication Director) with Thomas. Contact Sandra via marketing@royalsignals.org to find out more about how you can support The RSBF.

#CorpsFamily

Inspired by Thomas

Pictured above are fundraising cyclists Paul Forster, Chris Loyne, (Dave Gibson with Thomas), Rob McEwan and James ‘Steveo’ Stevens.  Inspired by Thomas’s story they cycled 1000 miles in 24 hours and raised more than £2,100 for the RSBF.

Pictured above are Gemma and Dave Gibson with Thomas and RSA Salisbury’s secretary and Royal Signals’ veteran Phil Osment. The RSBF supports serving & retired Royal Signals’ soldiers and their families.

Unplanned journeys can be just as rich and fulfilling as those we sought to take…