When people stare at your child ...
A deeply moving documentary tonight on BBC NI will give an insight into the work done by the Children's Hospice. Una Brankin meets one of the families featured, Siobhan and Colin Ball, from Crumlin, and their son Caelainn
Siobhan Ball is used to people staring at her much cherished five-year-old son in supermarkets and on the rare occasions he is out and about.
Due to a mass of cysts caused by a problem with the lymph glands, Caelainn has a large swelling on one side of his face and neck which has required up to 30 surgeries, and often draws unwanted attention and hurtful remarks.
But the protective Siobhan (42) doesn't let anyone away with insults.
"Kids have said things in front of us like, 'Look at that ugly baby,' and the mothers have just stood there and said nothing to them," says Siobhan, smarting.
"The last time that happened I shouted back 'You should've gone to Specsavers'. And Caelainn's not afraid to go 'What are you looking at?' if he sees someone staring. It happens all the time.
"We were at the zoo looking at the polar bears and these lads on a youth club trip were saying things about Caelainn, but their youth-leaders sent them home."
The lively and playful little boy is enjoying the attention from the BBC NI press officer and Children's Hospice representative when I call to his Crumlin home to meet his parents ahead of the family's appearance on tonight's True North series documentary, The Children's Hospice.
"Thang-kooo," says Caolainn with a winning smile when he's given a small gift, an utterance he couldn't have made without the intensive speech therapy he has received since he was a silent three year-old. Caelainn (pronounced Kay-lin) was born with Cystic Hygroma, a collection of cysts in his face and neck caused by a malformation of the lymphatic system.
He relies on an artificial airway to breathe and is fed through a tube in his stomach.
Siobhan and her husband Colin are their son's primary carers, a full-time job which includes a daily 45-minute drive to and from the special needs school, Mitchell House in Holywood, and regular flights on the air ambulance to London's Great Ormond Street Hospital, where Caelainn receives treatment.
His condition was apparent from Siobhan's 20-week pregnancy scan, and at 35 weeks another scan revealed a dangerous build-up of fluid in her womb.
The surgical team, led by Mr Keith Trimble at the Royal Victoria Hospital in Belfast, then had to undertake a highly unusual and intricate 'exit procedure' – dramatic surgery worthy of ER or Grey's Anatomy – to save the baby's life.
"It was the first operation of its kind done there," recalls Siobhan, a petite and feisty Belfast-born girl.
"There were 22 medical people in the operating theatre. The surgeons opened me up and operated on Caelainn's head while he was still attached to the umbilical cord, to keep the blood flow going between me and him.
"It took 18 minutes to intubate him first. I had been given a twilight anaesthetic so I was half awake – but high. When they got the surgery done they delivered Caelainn and rushed him to the ICU (Intensive Care Unit) for a tracheostomy, to clear his air passages, and told us the next 24 hours were critical."
All the while, Colin (38) sat worried sick by his wife's side. He had to give up his job as a mechanic to help care for his son and support Siobhan, who has five children aged 23 to 14 from a previous relationship.
"From that very first scan we were both really worried," says Colin, over tea in the couple's immaculate dining room.
"Then Caelainn was born really, really sick. His tongue was pushed back to his throat and he had a cyst the size of a melon, and a thousand more growing out of control inside.
"There was no underlying reason; it's just a fluke thing. Keith Trimble was very honest with us from the beginning about how difficult the condition is to treat, but he saved Caelainn's life."
The baby needed the tracheotomy surgery to create an opening in the neck at the front of his windpipe (trachea) for a tube to be inserted and connected to an oxygen supply and ventilator to assist with his breathing.
Fluid that still constantly builds up in his throat and windpipe can also be removed through the opening.
As her child was closely monitored in ICU, Siobhan was so distressed she couldn't bring herself to see him at first.
"I didn't see him for three days – I was afraid to, to be honest," she admits. "They weren't able to remove the swelling, the 'affected area' as they called it, until he was two months old. When I did eventually see him he was covered with tubes and I couldn't hold him for months. That was very hard, not being able to bond. But we've made up for it since and he's spoiled rotten.
"He can wind us round his little finger, like he can jiggle his tubes and monitors to get our attention. He's a right little character," adds Siobhan.
It was four months before Caelainn could come home. During that time family and friends prayed fervently for the tiny baby, born four weeks prematurely.
Siobhan says: "His bedside was like a shrine. My dad is Padre Pio's number one fan and there was a relic of him and all kinds there. People went to Lourdes and brought holy water back by the gallon. There's no cure as such for what Caelainn has but that didn't stop people praying for him."
Caelainn's life hung in the balance during those tough 16 weeks. Highly prone to infections, he was in and out of surgery throughout, with no guarantee of survival.
When he eventually began to stabilise, Siobhan and Colin were given an intensive two-week training course in how to care for him at home.
Colin says: "We learned CPR and we were given all the oxygen equipment and monitors, the same as they have in the hospital. We were taught how to work his breathing and feeding tubes. Caelainn functions normally from the abdomen down; it's the upper half that's complicated. Because the cysts are constantly growing inside him, his air passages are under constant threat so we have to get up in the middle of the night to clear the tubes and to feed him.
"He can take a wee bit of a chocolate biscuit or something like that, but his main nourishment is directly through his tummy. He has a button in his stomach to control that now. The thing is we are the only ones, apart from the Children's Hospice and the school (which has an on-site nurse), who can look after Caelainn. We can't leave him with anyone so we have no social life to speak of, and his grandparents don't get to spend quality time with him because it would be impossible for them to look after his needs."
A weaker couple might have buckled under the strain. Don't they ever get angry about the fate they've been handed?
"It makes you annoyed about people complaining about wee stupid things," Siobhan admits. "You're thinking, 'You don't know how easy you have things'. For instance moving house was a nightmare with Caelainn, God help him, having to come on every run.
"This whole experience with his birth completely changed me. I was too calm – I was in total denial at the start ..."
"Yeah you went in on yourself," Colin adds. "But we were too busy running about to get depressed. We were maybe just a bit snappy. I was cross at the start, but what are you going to do? You just get on with it and accept it."
Caelainn was a good baby who slept well but vomited a lot, which put him at constant risk of choking. The Royal referred him to Great Ormond Street Hospital for Sick Children, where his parents were given a glimmer of hope.
As Siobhan recalls: "The surgeon there, Ben Bartley, said 'Don't worry, we'll sort it out'. They're better funded over there and they just took control. It was the first positive feedback we got, and it was such a relief.
"They try out various agents to take down the swelling and they do sclerotherapy injections straight into their veins. Caelainn's condition is so rare it's trial and error though, hit and miss.
"They can rectify problems as they emerge – they can't do anything major as he's still growing and developing. There would be a risk of facial paralysis but he has the best of care and lots of support, and he has a special wee connection with Keith Trimble."
A bright outgoing child, Caelainn has won an award for his courage and also taken part in a fundraising fashion show by the House of Fraser.
He's a bit of a jet-setter too; Colin jokes that he and his family are now frequent fliers on the small air ambulance to London. Whereas Siobhan is a nervous passenger, Caelainn loves the flight and enjoys any turbulence. The family were last in Great Ormond Street three weeks ago after Caelainn developed one of his regular chest infections.
"We have to be very careful in the cold and even bathing him, in case water gets into his tubes," Colin explains. "He can't go swimming or play football – he gets breathless.
"But he copes all right; it's all he has known all his life. He knows all about his condition and how to use the equipment and monitors. He can even mess with the feeding tubes to get our attention. He loves what they call the soft play at school and he has come on really well there. The speech therapist is teaching him to use his vocal range and his writing has improved. He couldn't speak until he was three; he could just use baby sign language."
The charming five-year-old also enjoys the activities laid on by the Children's Hospice at the Royal.
In the True North documentary he is seen giggling as his favourite carer Catherine paints the soles of his feet bright red for an art game. In another touching scene he is flashing his crooked but cute little grin as he gives Catherine a lift down the corridor in his toy car.
Siobhan says: "Catherine's a hoot and he loves her – he cries when she's not there. He also made a great wee friend at the hospice but he died, sadly. Caelainn didn't really understand; he was looking for him and became unsettled, asking where he was. But the staff are great and give us a little bit of a break. We can leave Caelainn overnight, although the parents' accommodation's so nice we sometimes stay over.
"Unfortunately they can't give us the hours they used to because of the cut backs. Caelainn needs a lot of care, and they're totally dependent on fundraising. They've no help from the Government but they're starting a bit of care at home for us soon, which is great."
The couple has been offered counselling by the hospice, which also has a bereavement team on hand.
Siobhan was very touched when the team offered counselling for one of her older daughters, after she lost a baby to cot death.
She and Colin hope tonight's True North documentary will help spread the word of the good work done by the hospice, and the need for funds, as well as raising awareness of the condition that makes the uninformed stop and stare at Caelainn.
"We don't really know what the future holds for Caelainn, no-one has said yet," adds Colin. "Hopefully there's some light at the end of the tunnel with these different medications. In the meantime we're very grateful for the hospice's help. We never knew about it before this. I thought hospices were just for death. There is palliative care but they give respite to, which is a great help to us."
Inspiring documentary uncovers the true human spirit
There are more than 1,300 children and young people living with life-limiting or life-threatening conditions in Northern Ireland, and both they and their families need support.
As care is often required 24/7, with little respite or support, families' lives can be emotionally and practically turned upside down as their child's illness progresses.
The Northern Ireland Children's Hospice is a local charity based at Horizon House, O'Neill Road, Newtownabbey, which supports these families where possible. Offering them a much-needed break from their daily routine of being a carer, the hospice provides both specialist short breaks and end-of-life care for children and their families.
The Children's Hospice is the only service of its kind here and support families through their journey by providing professional care and giving families the opportunity to have quality time together, in the hospice or in the child's own home.
Tonight's hour-long True North documentary features families, including the Balls, who are cared for by the Children's Hospice, and gives an insight into the much needed service the charity provides.
One child currently under their care is six-year-old Natasha, who has a rare condition called 18q Deletion and Pitt Hopkins Syndrome.
She experiences breathing and stomach problems as well as recurrent seizures.
In the documentary Natasha is filmed spending a weekend in the hospice, while devoted mum Natalie and grandmother Denise have a much-needed break.
The film also shows three-year-old Oisín McConnell, who has a rare developmental condition, visiting the hospice for the first time, and includes a moving interview with Janine Beattie, who lost her 14-year-old son Jordan in 2012.
Janine spent her last days with her son at the Northern Ireland Children's Hospice and she describes the support given to her and her family, ensuring those final days with Jordan would provide the family with moments they could cherish forever.
Producer and director Edel O'Mahony from Waddell Media, who made the programme for BBC Northern Ireland, says: "I think this documentary illustrates the strength of the human spirit when it comes to looking after the people we love and that a little help can go a long, long way."