Monday 29 May 2017

Little Fighters: Benhaffaf conjoined twins

Photo courtesy of Medical
Illustrations Great Ormond
St Hospital, NHS Trust
Photo courtesy of Medical Illustrations Great Ormond St Hospital, NHS Trust
Azzedine Benhaffaf holding his son Hussein as his wife Angie holds twin brother Hassan during a civic function at Cork City Hall

Conjoined twins Hassan and Hussein Benhaffaf made international headlines when they were born in a London hospital in December 2009 and four months later separated following a 14-hour operation.

In this exclusive extract from Angie Benhaffaf's new book, 'Little Fighters', the proud Cork mother tells of her struggle to get to see her boys who were taken from her immediately after their birth and the joy she felt the very first time she held them.

The nurses smiled as I was wheeled past them and alongside the boys' bed. It felt strange being taken to see your own children for the first time, surrounded by people who had already been caring for them for days.

I barely knew what they looked like. I cried from the relief of finally being with them. It was overwhelming. I couldn't believe they had come off the ventilation within just 48 hours.

They truly were my Little Fighters -- in name and spirit!

Just two tiny tubes were going down their noses to assist with their breathing now.

I said, "Hello, my angels, I'm your Mummy." One of the nurses carefully lifted the boys out of their bed, while another moved all their monitors and wires around to where I was sitting.

Then, finally, I held my golden boys. I had told myself every day that they were going to live, and I was going to get to hold them, kiss them, smell them, but right until that joyous moment I don't know if I ever truly believed it.

Throughout my pregnancy I had questioned why I was being punished with conjoined twins, but now I understood: this was no punishment, this was an amazing, wonderful gift.

I knew we were chosen to be their parents, and it felt like such an honour to be their mother.

Suddenly Hassan woke up and the look of his beautiful newborn eyes filled me with happiness. I noticed the lovely heart shape their bodies made, and I loved them even more.

I wasn't sleeping a lot; I felt like hell, but I had to get up, get to Hassan and Hussein. So few people knew about the twins at University College Hospital London, that one day, while I was shuffling around my bed, a nurse came into my room and asked me where my baby was.

I had to say that I had given birth prematurely, and my baby was in another part of the hospital.

It hurt to have to lie about my precious boys, but I just didn't have the energy to share our secret with anybody else.

I spent 11 long nights in UCHL and on the 12th day, Thursday, December 10, I asked to be discharged. I knew my place was with my babies. It wasn't enough seeing them every other day. I needed to be there with them all the time.

To my delight the doctors agreed to discharge me. My husband Azzedine had found some new accommodation with a lift, as I could not manage stairs.

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My daughter Malika kept asking me whether I was home for good, while my other girl Iman squealed with delight. That night they insisted on sleeping in the single bed with me. I was nervous they would upset my wound, but it did feel good to sleep nestled into them again.

The next morning I got up when it was still dark outside. It was bitterly cold with a thick blanket of snow. I threw my furry coat on over my pyjamas and slippers and set off for the hospital.

I remember my Aunt Val laughing at me, and telling me that I couldn't go out dressed that way, but I didn't care. I was going over to those boys, and I was going to visit them on my own.

I decided that morning that I wanted to get a family portrait done after my visit. I went home and put the girls in their best dresses, and asked Azzedine to put on a nice shirt.

Val returned with a three-pack of babygrows, so I took the tiny little suits out of the packaging and just stared at them for a while, wondering how I would get them on the babies.

Suddenly it struck me that if I press fastened one babygrow to the other, I could get them on the pair of them. When I dressed them I tried my best to make sure they wore two completely different patterns or colours, to let people know they were two individuals, with two distinct personalities.

I felt I had to present them to the world like that, so people would realise just how distinct they were from one another.

I packed the babygrows in a bag, got the family together, and set off for the hospital to proudly pose for our family photo. The boys were wheeled down with their oxygen supply and handed to me. I had to kneel down with them for the shot and I remember the pain I felt trying to get back up afterwards, but it was worth it -- the photographs were lovely.

The boys had been in the NICU (Neonatal Intensive-care Unit) ward for the best part of two weeks when we were told they were well enough to be moved on to a surgical ward.

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They had been born six weeks premature, and coupled with that they were conjoined and had undergone surgery in the first 48 hours of their lives, but they were thriving, and coping well with their feeds.

They looked really healthy and handsome. I had grown to love how they looked, and couldn't imagine them being any other way.

I would watch Malika's eyes examining every part of them. I worried that it would upset her that they were different, but it never did; she adored them.

Sometimes she said, "Mam, I wish the brothers had two legs each." I knew it saddened her, and I told her that her brothers would do everything she could do and one day they would get pretend legs and walk hand in hand with her and Iman.

On December 11, Azzedine and I were brought into a room to be given an update on the boys' condition, a meeting we had been very nervous about.

We felt like frightened children as their surgeons Professor Agostino Pierro and Mr Edward Kiely came in with key members of the boys' team. The room fell silent as Mr Kiely began to speak.

He reassured us that the boys were doing very well, and we were in fact going to be able to take them home soon so they could grow and put on weight.

He then told us he hoped the boys would be able to return to the hospital to undergo separation surgery on April 7, 2010.

Obviously I knew separation surgery was on the cards, but I had no idea it would be that soon. I thought it was such a strange coincidence that they were going to be separated exactly one year on from the day they were created.

In fact, right up until the very day before the boys' surgery took place, we didn't know if it would even go ahead, which was difficult. They were gorgeous little babies now, but they wouldn't be babies for long. Soon they would be boys, then teenagers and finally men. I knew what we had to do.

As the weeks went by the boys continued to thrive, and we could hardly believe our luck. Despite our happiness, however, we were terrified that they were leaving the NICU ward to move to a general surgical ward.

In normal circumstances parents would be jumping for joy that their babies were considered well enough to leave intensive care, but our happiness was tainted by fear. How would we be able to keep our presence there quiet?

I also felt very sad, saying goodbye to the amazing staff who had cared for our babies so well. They had seen us through such a difficult period, and we had grown very close to them.

When we arrived at the new ward, I was relieved to see the boys had their own room. We protectively drew the curtains around them in case anyone looked in. I was already tired of the secrecy and having to hide them all the time, but at least our secret was safe for now.

There were some amazing pluses to the boys being out of the high dependency unit; one was being able to feed them ourselves. We started off with one bottle each and Azzedine and I would take turns to feed them. It was like a game of Twister sometimes, crossing your hands over and back as they hungrily drank.

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A source in Ireland had revealed how a pair of conjoined twins had been born in London to an Irish mother. I was absolutely gobsmacked. I didn't know what to do. We were dumbfounded. We asked ourselves over and over how they could possibly know this. Who had told them about our precious boys?

The hospital was refusing to respond to the media enquiries, so we knew nothing would be printed straight away; but I also knew that it would only be a matter of time. I was later told that the maternity hospital in Cork had also been receiving calls. It felt like the world was closing in on us, pressing down on our little family.

Stephen Cox, the hospital's press officer, suggested we might need an agent. It was only after the boys' story hit the headlines that I understood why.

Nothing prepared us, a normal, everyday family, for the extent of the worldwide interest in our boys.

Malika often asked me why everybody was fussed about the babies. We knew that male conjoined twins were extremely rare, but we had no idea just how much attention they would generate.

Mr Kiely was calling in to check on the boys every day, and he was very happy with their progress. Then, one afternoon, about 10 days before Christmas, he came to see us and told us that Hassan and Hussein could come home to Cork...

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Little Fighters: The Million-to-One Miracles, (Gill & MacMillan) is out now, €14.99

Irish Independent

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