'You cry, but this is life. You have to just get on with it'

The Benhaffaf family's positivity has brought them through Angie's pregnancy and the operation to separate conjoined twins Hassan and Hussein. But caring for two boys with complex disabilities is a daily challenge, writes ROISIN INGLE

IN A room in the Enable Ireland centre, Ballintemple, Co Cork, two of the best-known babies in the country are babbling to each other, blowing kisses and playing an energetic game with a ball. Like many 16-month-old boys, Hussan and Hussein Benhaffaf can say “ta ta” for thank you and they point enthusiastically at anything that takes their fancy, from bottles of milk to shape-sorting puzzles. Today, the formerly conjoined twins are wearing Superboy babygros, appropriate clothing given that the odds of them surviving their birth back in December 2009 were one-million-to-one.

Kneeling on the floor beside the boys is their mother, Angie Benhaffaf, and Gillian O’Dwyer, physiotherapy manager of the centre. It’s obvious when we meet that Benhaffaf has been crying. Her positive outlook, lauded in countless media reports, has been crucial to coping with what her family has been through over the past two years. But she says the centre is a place where she doesn’t need to put on a brave face about the daily challenges of caring for two boys who have complex disabilities.

“I feel sometimes we are seen as the Brady Bunch. All happy and smiley and everything is great,” she says. “And that’s because we don’t want people to feel sorry for us. Positive thinking has got us to where we are now. You cry, but this is life. You have to just get on with it. And we have our two beautiful little fighters which is all that really matters.”

“Little fighters” is what she and her husband, Algerian-born Azzedine, called the boys from the beginning and it’s also the name of Angie’s recently published best-selling memoir.

Before they were separated in Great Ormond Street Hospital in London just over a year ago, Hussan and Hussein shared a gut, liver, bladder, pelvis and the pericardium sac surrounding their hearts. They were joined from the chest to the pelvis and had only one leg each. News of the successful 14-hour surgery to separate the boys – carried out by Cork man Dr Edward Kiely – lifted the spirits of a nation mired in economic and political gloom. On the surface, the life-or-death operation may have appeared to end to the family’s trauma; in fact, it marked the beginning of another set of ongoing medical issues.

O’Dwyer explains that under their babygros, Hussan and Hussein wear “second skins”, custom-made outfits that have the appearance of short lycra wetsuits. The €5,000 orthotic garments are boned at the sides and are designed to hold the boys in alignment with their spines. They both have a scoliosis which is being controlled by the suits. Because the boys shared a pelvis, they also need a sitting prosthetic which gives them stability and helps maintain their posture.

The Enable Ireland centre offers all the vital specialist secondary orthopaedic services from prosthetics to orthotics under one roof.

“The first five years is so important for all children with disabilities,” says O’Dwyer. “The alternative to the second skin is locking somebody into a cast and they wouldn’t be able to move . . . but look at them, these guys are movers,” she laughs, gesturing to the brown-eyed boys, scooting around the floor. “That just wouldn’t work.”

Accepting the boys’ limitations has been – and continues to be – a struggle for Benhaffaf. “My attitude at the first appointment at the centre was ‘my boys aren’t disabled, why are we here?’ Hussan and Hussein were beating milestones all the time; they were doing so well. The staff here bring me down to reality because I won’t let reality in,” she says.

“I’ve learned not to accept what people say. At the start of my pregnancy, I was told that if I carried them to term neither of the babies would live and that there was a high risk I could die. That nearly destroyed us. If I was a different person and hadn’t carried the pregnancy through, look what I would have missed out on,” she says.

“I know I am far too optimistic, but I can see them walking on their second birthday . . . I’ve been aware of their determination since they were in the womb and that’s why I know they will walk and stand.”

A typical conversation between O’Dwyer and Benhaffaf about the possibility of the boys standing and walking one day with the aid of prosthetics illustrates this perfectly:

O’Dwyer: “At the end of the day, the boys will decide how they mobilise. And they are two very bright boys.”

Benhaffaf: “They will walk . . . they will.” O’Dwyer: “I’ve been here 20 years. You can have the best walker with the best ability and sometimes they choose to use a wheelchair, just because it gets them from A to B faster . . . Mobility, as the word is used here and defined by the World Health Organisation, means the best way to function and participate in their environment.”

Benhaffaf: “The W word [she means wheelchair] is hard to hear. I suppose if I go back to the very beginning, I had this feeling in my heart that they would survive. I just have this stubborn little streak in me, I can literally see them walking in my head and I just think, why not, they have defied everything so far.”

O’Dwyer: “I give the example of a four-year-old who has turned around to me and said ‘I want to go and play next door but by the time I get there, it’s 30 minutes later and the game is over’, so he wanted a wheelchair.

Benhaffaf: “I find it hard to visualise that.”

THE BOYS HAVE OTHER health issues that the Benhaffafs have never spoken about. “From the beginning, our guide when handling the media interest was to ask ourselves what decisions would make the boys proud when they are older. This sometimes means holding back,” explains Benhaffaf.

After the appointment, she puts the boys in their car seats and we head to the small family home in Carrigtwohill, Co Cork. Last May, the twins were offered this spacious Fiat van for a year.

“They rang recently and when I saw the number come up, I dreaded them taking it back. But they were calling to say we could keep it for another year. There is no way we could manage all the appointments and carrying all their equipment around without it,” she says.

The Benhaffafs have two other children, sisters Malika (7) and Iman (3).

Neither is at home when we arrive. Dad Azzedine, who had to give up work to cope with the ongoing care of the boys, has gone to pick up Iman from Montessori. Benhaffaf shows me the home physio equipment the boys use. There is a supportive mat, which the boys must sit in for a couple of hours a day while wearing the sitting prosthetic, and another contraption called a stander. “I hated it at first,” she says. “It reminded me of the table Frankenstein’s monster was strapped to.” The boys are used to it now and can manage 45 minutes at a time. She straps Hussan in to what looks like an elaborate reclining high chair and then manouvres him into a standing position. The idea is that it puts weight on his leg and prepares the muscles for the standing prosthetic.

With the only bathroom upstairs, the house is not suitable for the twins’ evolving needs but at the moment, there is no chance of selling it to buy a bungalow.

Azzedine arrives home with Iman, who hugs Hussan on his stander and blows bubbles for Hussein. Not working has been a massive adjustment for Azzedine, a chef who didn’t miss a single day off sick in nine years in his job. “If he went back to work, it would help financially but I would be in a grave,” says Angie.

When the boys are on the floor together, they headbutt each other playfully. “I told the postman I had to separate them the other day, pardon the pun, because they were doing that,” their mother laughs.

The eldest daughter Malika is collected from school later. The loving family dynamic between the six of them is a joy to observe.

It’s not surprising that Angie seems to be on a 24-hour-a-day vigil for her sons, unable to relax for fear of the next trauma that might unfold. She often misses meals, swept up with the constant stream of appointments and physio and the needs of her other children.

“My brain is asleep,” she says wearily. “If I am honest I need counselling. I don’t think anybody could go through that pregnancy and birth and not need help. I will never, ever get over handing them over for the separation.”

Her account of this moment in the book makes for harrowing reading. “I made a promise that day that I would never be apart from them again. I am probably needier of the boys than they are of me right now. Sometimes I think I’m conjoined to them.”

Her positivity still shines through. She says even if she had the chance, she wouldn’t change a thing.

“The boys are a gift. They renewed our already existing values about what was really important in life, the whole experience somehow made us better people. Whatever else happens I have these two beautiful boys and my lovely girls and my husband. After that nothing else really matters,” she says.

If you would like to donate to help with Hassan

Little Fighters: The Million-to-One-Miracles by Angie Benhaffaf with Edel O'Connell is published by Gill and MacMillan.

If you would like to donate to help with Hassan and Hussein's ongoing care you can do so at: The Little Fighters Fund, Permanent TSB, Patrick Street, Cork.

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