Wednesday 20 November 2019

Little fighters: All the staff cried as my twins gently stroked each other's faces. . .

In the second exclusive extract from her book Little Fighters, Angie Benhaffaf describes how her twins Hassan and Hussein adapted to life after the operation to separate them; how she coped with the intense media scrutiny; and the joy she felt at finally flying back home to Cork as one big happy family

Happy families: Angie with her twins Hassan and Hussein at home in Cork. Photo by Michael MacSweeeney / Provision
Happy families: Angie with her twins Hassan and Hussein at home in Cork. Photo by Michael MacSweeeney / Provision

I had been looking forward to doing some clothes shopping for my boys now that they were separated.

This was a fresh start for them and I was dying to do what I had never been able to do before, and that was just pick out any little outfit I desired without having to check if there were press fasteners or buttons.

Finally, I would no longer have to take things out of the packaging to see if they would fasten together.

One afternoon Azzedine and I headed to the Disney store on Oxford Street.

I no longer obsessed about dressing them differently to emphasise their individuality; now I could dress them in the same, cute outfits.

I bought them a set of matching babygrows and hats that day and just couldn't wait to get back. I took such pleasure in putting their new outfits into two separate drawers; one by Hussein's cot and one by Hassan's.

One afternoon I brought Malika over to see her brothers after school. It was just the two of us in the room and I remember her chatting away to Hussein, telling him all about her new school and her day when she suddenly stopped and fell silent.

Suddenly she said, "Mummy, I can see the legs now," to which I replied, "What do you mean, sweetheart?"

She looked at me with tears in her eyes and said, "Mummy, I can see their legs are missing now."

"But we always knew that, love," to which she replied, "Yes, but I just wish they could grow another leg each."

From time to time, she would say to me how it made her sad that the boys had only one leg each, but I would tell her they were going to get two new superhero legs one day and were going to walk and run and chase her around the park.

When the twins were joined, I had always covered up the fact that they had only one leg each. Every time we took them out I would wrap them tightly in a blanket so nobody could tell, but now that they were getting better and stronger I knew it wouldn't be long before they were out of intensive care.

It was time to let people know.

I thought long and hard about how we would do this and finally decided that as we were still filming the documentary (a programme by the producers of ITV's Tonight show documents the lead-up to the boys' surgery. Called Separate Lives, it was narrated by Julie Etchingham and broadcast on May 6 last year).

Later, when the documentary was aired, I felt very anxious because I knew it was going to be the first time that we would reveal the boys were missing limbs, but the way Mr Edward Kiely, consultant paediatric surgeon at Gt Ormond St Hospital, dealt with it was hugely dignified.

As he was being interviewed he just said the boys were joined from chest to pelvis; they shared a liver, chest, bladder and gut and they had one leg each. That was it; he said it very casually, almost like an after-thought, so there was no real issue made of it. I didn't have to worry about keeping it a secret any more.

They had been on ventilators for only two days when they began to breathe on their own, just three and a half weeks after their separation.

It was nothing short of a miracle how quickly they recovered; I kept waiting for something to go wrong, but it just kept getting better and better. I hardly dared to believe it.

They left the Paediatric Intensive Care Unit ward on May 1 and went back to a surgical ward. I filmed the journey from intensive care to the Woodland Ward, my little boys smiling up at me with their dancing eyes.

It was such a celebratory moment, full of light, full of hope. All the other parents were hugging us and kissing us and we were jumping for joy.

The nurses put the boys in their new cots and I remember laughing as the girls ran from one to the other all afternoon; it was such fun. I loved every second of caring for them. As hard and exhausting as it was, it was such a joy to see them alive and crying and causing a fuss.

All the staff cried the day we put Hussein into Hassan's cot; it was amazing to watch how they immediately went back into the same position they had been in when they were joined. They looked at each other in wide-eyed wonder and gently stroked each other's faces.

The hospital released a statement to the media. It said: "They are breathing unaided and are being bottle-fed. Doctors at the hospital continue to be pleased by their progress and recovery. Earlier today, the boys were placed in the same cot together for the first time since they underwent separation surgery in April."

A few days later, we were told we could bottle-feed the boys, which was incredible, and a couple of days later they were put on solids for the first time.

They were like an unstoppable life force. With each passing day the boys got better and stronger and livelier and more beautiful.

Sometimes I would have to pinch myself to make sure I was not dreaming. They were defying all the odds; they were truly my Little Fighters.

Mr Kiely came to us a few days later and said the boys were almost ready to go home to Ireland.

"There is no reason for them to stay in hospital. They are too well to stay in a hospital any longer," he said.

Azzedine and I were speechless; we just stood there looking at him while happiness rushed through us. "I just can't explain it," he said. "I have never seen any other set of conjoined twins recover so quickly!"

It was strange to hear a doctor with his experience say he couldn't explain why our babies had recovered so fast. He told us the babies would be transferred to Cork University Maternity Hospital within days, not to be admitted as in-patients, but because the staff there could get to know them and their needs, and then we could go home!

So, once again, and thankfully for the last time, a plan was put in place for us to go home to Cork. This had been my dream from the very first time I found out the boys needed to be separated. I had imagined all six of us boarding a plane together, bound for home, hand in hand, triumphant, ready to begin our new lives.

I remember thinking nothing could ever make me happier than for my boys to survive the operation and for all six of us to come home well, happy and together.

All I wanted to do now was try to rebuild our lives, get on with living like any normal family and watch our children grow up together. The press office at great Ormnod St Hospital told us that we needed to get a statement ready to release to the media that we were coming home.

The statement read: "We are so relieved and so happy to announce that our little fighters are coming home tomorrow... Thank you to the surgeons and staff at Great Ormond Street Hospital for giving our boys the incredible gift of separate lives! Not forgetting University College Hospital, London and Cork University Maternity Hospital who all shared in their care."

So on Friday, May 21, I woke at first light to such a sweet rush of happiness: we were going home! I lay in bed for a few moments and thought how truly happy I was to be returning to our quiet little village with its green fields and birdsong and peace.

We were overcome with emotion as we said goodbye to the staff at the hospital; after all, they had been through this amazing journey with us every step of the way and felt like part of our family.

Before we gathered up the boys' things we got some photographs taken with Mr Kiely and Prof Pierro, who held one of the boys each.

I couldn't stop smiling as we packed for home. As we boarded the same plane I had cried my eyes out in eight weeks earlier, I was delighted to notice the same pilot, Captain Mark Prender-gast, was to bring us home. I cannot convey how utterly different that flight was to the last; now we were triumphant and in a party mood.

There was laughter and jokes and singing and, as we began our descent over Cork, I took Azzedine's hand and felt my heart soar. I wanted the world to see our boys and share in that magical moment when Azzedine and I stepped on to the runway with our sons.

Azzedine got off with Hussein first and I followed with Hassan; I put my foot down on Irish soil with my wondrous boy in my arms.

Malika skipped out on to the runway and the pilot carried my sleeping Iman.

The media and well wishers started shouting, "Welcome home, welcome home!"

I felt emotion welling up from the pit of my stomach.

I was so excited; I just started waving and punching the air and shouting, "Up Cork!" and "Up the rebels!" and "They did it!"

Malika shouted, "Three cheers for the Little Fighters!" and we all laughed in delight.

An ambulance was waiting for us on the runway and a taxi for Azzedine and the girls.

We pulled up at the hospital to find the boys' new team waiting for us. I was so excited that I jumped off the ambulance and hugged and kissed all of them; I was literally bouncing with happiness.

When we got to the boys' cubicle I noticed there were two cots for them; I asked the nurses if we could take one of the cots away as I wanted them to sleep together. I told them as long as I was alive they were never going to be apart again.

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

Irish Independent

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