Theodora Children’s Charity
Total raised: £75,484
Ann-Marie Bishton, 49, from Hampshire tells how Theodora Children’s Charity’s Giggle Doctors make a difference to her family
Theodora Children’s Charity – the facts
- Theodora Children’s Charity was founded in 1994 by two brothers in memory of their mother, Theodora Poulie, who brought joy, laughter and storytelling to one of her sons when he was hospitalised for many months.
- The charity trains professional performers called Giggle Doctors to visit children in hospitals, hospices and specialist care centres across England. By combining music, play, magic and storytelling, they bring magical moments to brave children in challenging times.
- Last year, the 25 Giggle Doctors visited more than 33,000 children throughout England.
- To date, the lives of more than half a million children have been improved thanks to the Giggle Doctor programme.
- Visit uk.theodora.org to find out more.
The Candis Big Give
Looking at my four-year-old daughter, Emily, you would never know there was anything wrong with her health. She is a phenomenal little girl who is a joy to be around and never ceases to amaze me. However, there is an awful lot going on in the background, and it has been a difficult journey to get to where we are today.
I started to become concerned about Emily’s health in April 2014, when she was three months old, as I noticed she was very wheezy. I took her to the GP three times but was told there was nothing to worry about. Then, in November 2014, she woke up distressed and struggling to breathe. We called an ambulance and were blue-lighted to Queen Alexandra Hospital in Portsmouth, where she was treated for suspected croup with nebulised adrenaline.
After about 48 hours, Emily wasn’t getting any better, so the doctors rang the Paediatric Intensive Care Unit at Southampton Hospital for advice. The consultant said she didn’t think it was croup, and as Emily needed more adrenaline nebulisers a team from Southampton would have to come and retrieve her. They asked for Emily to have some X-rays in the meantime – which revealed that her heart was on the wrong side of her chest and her right lung had collapsed.
Emily was rushed to the intensive care unit, where they issued a variety of tests – including heart scans and CT scans. Tests revealed she had a rare congenital condition called Scimitar syndrome, which means her two right pulmonary veins are draining into the wrong chamber of her heart, so her heart doesn’t work as efficiently as it should. Her right lung is also underdeveloped and her left lung is overdeveloped, so her heart has been pulled over to the right and has caused her left bronchus to become very stretched and narrow.
Although my husband, Michael, and I were shocked at the diagnosis, we didn’t have much time to take it in as Emily was still deteriorating. She had RSV pneumonia, HSV pneumonia and influenza. Her right lung had collapsed twice and her left lung once, so she had to have three chest drains put in. As her lungs were so delicate, the pressure from the ventilator kept popping holes in them, so she was put on an oscillator, which shakes the chest at high frequency to get air into the lungs. A CT scan also revealed several rogue blood vessels had grown around Emily’s heart, which were draining into her right lung, so she had keyhole surgery on 11 December to correct this.
We were told Emily had a 50/50 chance of pulling through, so her sister, Amelia, now ten, came into the hospital to say goodbye. She pulled up a stool next to Emily’s cot and started chatting to her and stroking her head. The next day, Emily turned a corner and started to get better – and I’m convinced this was partly down to hearing her sister’s voice.
On 8 January, after almost seven weeks in hospital, Emily was discharged and we were delighted to be able to take her home. However, she was still very poorly.
Since then, Emily’s condition has meant frequent visits to hospital, including four stays in paediatric intensive care and numerous other admissions, and we have spent about 150-odd nights in hospital.
Her heart doesn’t work efficiently so she gets short of breath very quickly and has a wheelchair to use when needed. She’s also on a ventilator at night and is tube-fed as she has been diagnosed as oral phobic, due to everything she has been through. Our cardiac consultant explained there is not enough data on the syndrome to predict how it will affect Emily in the future. She will need surgery at some point to correct her vein but we don’t know when. We just try to take each day as it comes.
Emily has regular appointments with her cardiac and breathing consultants and also takes a lot of medications, including antibiotics, a preventer and reliever inhaler, and a medication called montelukast, which helps to keep the inflammation down in her lungs. Her breathing is our biggest concern and we’ve got a list of things to look out for that determine whether we need to get her into hospital.
It was during Emily’s first admission in December 2014 that she had her first encounter with one of Theodora Children’s Charity’s Giggle Doctors, Dr Ding Dong, who came in and started blowing bubbles and blowing up balloons. You could see the change in Emily straight away, as she went from being lethargic on her pillow to sitting up and taking notice of what was going on, with a smile on her face.
Since then, she has enjoyed many visits from the Giggle Doctors – who are performers trained to work in hospitals – and is always so excited to see them. You only need to say the words Giggle Doctors or Dr Ding Dong and you will see her face light up!
When Emily was first in hospital, she had a difficult time withdrawing from the sedation medication and would scream and cry every time I needed to leave the room, but the Giggle Doctors would come in and take her attention away from feeling awful. It also took the pressure off me by giving me a ten-minute window to sneak away for a coffee or just relax a bit.
There’s only so much you can do to entertain children in hospital and the Giggle Doctors really break up the monotony and give them something to smile about, which is incredibly important, as a child who is relaxed and happy will get better a lot more quickly. They lighten the atmosphere and get you laughing again even during the most difficult of times. The hospital would be a lot duller without them.
Photos: Nick Dawe