- Email: [email protected]
A parents perspective
Seminars in Pediatric Surgery 24 (2015) 260–262
Contents lists available at ScienceDirect
Seminars in Pediatric Surgery journal homepage: www.elsevier.com/locate/sempedsurg
A parents perspective Angie Benhaffaf n “My Little Fighters” as I affectionately call them came into the World on the December 2, 2009 and they were joined from chest to pelvis sharing everything except the heart. It was an emotional pregnancy, a traumatic birth, followed by a 14 hour surgery at Great Ormond Street Hospital to separate my wonderful boys in April 2010. Hassan and Hussein are now 5 years old and typical little boys except they have a “superman leg”!! Let me share with you our amazing journey that reminds us all of the important things in life: which are family, hope, and unconditional love. On the July 2, 2009 our lives changed forever. We went for our 12 week ultrasound scan on my third pregnancy. I was accompanied by my husband and two little girls aged 2 and 5 years. We were all excited looking forward to seeing baby number three for the first time. The week before my first scan I confided in my close friend that I felt something was wrong with the baby as I just felt different to my previous pregnancies. My friend told me to stop worrying and that all would be fine, but I have always had good gut feelings on things and this worry just would not go away. I prayed all would be fine and the day of the first scan arrived. We all sat in the hospital waiting room waiting to be called in, and as my name was called my elder daughter needed to go to the bathroom so my husband said they would follow me in. I lay down on the bed with my younger daughter in her pushchair curiously watching everything. The sonographer squirted cold gel onto my tummy and with a worrying look I asked if she could wait till my husband came back as I was a bit scared. She asked why and I explained I was worried something was wrong. So she said she would get started and within 30 seconds of her scanning me I knew from her face something was terribly wrong. She told me to wait till my husband came back but I pleaded with her to tell me what was wrong with my baby. She softly told me “I am seeing two babies, but something I have never seen before … your babies are joined.” I cried out and begged for it to be a mistake. My husband and daughter came into the room and saw me heartbroken. I told “itʼs twins and they are joined together.” We both held our little girls and cried. We then went home and it was as if my whole world had fallen apart. I did not drink, I did not smoke, and I took my folic acid so why is this happening to me I asked over and over again. I rang my family GP and explained that I was carrying conjoined twins and if he knew anything about this as the internet was full of negative reports on the subject and I needed to find hope. By pure coincidence and faith, as I see it, he told me that a friend with whom he played rugby and went to the same college
n
Corresponding author. E-mail address: [email protected]
http://dx.doi.org/10.1053/j.sempedsurg.2015.07.007 1055-8586/& 2015 Elsevier Inc. All rights reserved.
was an expert in “conjoined twins” at Londonʼs Great Ormond Street Hospital (GOSH). So I rang Mr. Edward Kiely a week after learning my babies were joined and this incredible man gave me hope. Mr. Kiely spoke honestly to me and we kept in touch throughout the pregnancy to see how the twins were growing. For 6 weeks I went into a terrible dark place of sadness and pain. I did not want to eat or drink and I became so dehydrated my lips had started to bleed. The only time I left the house was for my weekly scans to see if my babies were still alive as it was thought they would die in the first trimester based on statistics. At my 20 week scan we had a heart specialist examine me as it was thought up until then that my precious twins shared everything including the heart. But thank God that day we found out they each had a heart and that my “little fighters” were boys! There and then at my 20 week scan I named my little duo “Hassan and Hussein.” I was so happy they each had a heart and it was the turning point in me going forward. My husband was so sad as he had longed for a son after having two daughters and yet here were two sons being dangled before him and it was thought neither would survive. I was happy knowing that my boys now had a better chance of survival as they each had a heart. From this day on I was determined to fight for my boys survival and will them to live. There were many sad days through my 34 week pregnancy but there were also some incredibly happy days. At 24 weeks gestation, accompanied by my family, I had a 3D scan which showed that the twins were alive and moving in my womb. I needed to do this as I wanted my little girls to have the chance of seeing their little brothers alive if the worst came to the worst at the birth. Again going on statistics many conjoined twins are either still born or can die shortly after birth. At that 3D scan we watched our little boys clasp each otherʼs hands in my womb right before our eyes. It was our miracle and it comforted me so much to know that no matter what happened the boys had each other. To this day I watch that incredible DVD that shows Hassan and Hussein clasp hands in the womb through their barely formed fingers and it fills my heart with love and hope. My little girls used to sing songs to my growing bump and talk to their little brothers. My elder daughter used to sing Michael Jacksonʼs song “You are not alone” to them and to this day she sings it for them. I feel the twins knew how much they were loved ever before they were born and they fought to survive. The maternity hospital in Cork, Ireland near to where we live gave us wonderful care throughout the pregnancy but told us the birth was too high risk to carry out in Ireland and that we would have to travel to London for it. This scared us greatly as we did not know anybody in London and felt it would be a very lonely place for us to be but I was so wrong. We met the most incredible people
A. Benhaffaf / Seminars in Pediatric Surgery 24 (2015) 260–262
at Londonʼs University College Maternity Hospital (UCMH) who have remained close friends to us. But the most important thing to us was that our babies had the best chance so on the November 30 my husband and my two little girls took a flight to London not knowing what lay ahead. We arrived at UCLH maternity hospital and very few people knew of our arrival there as they were keeping it strictly private for fear the media would find out about our little twins, as “conjoined twins” seem to create such huge interest in the media. It was honestly a terrifying experience to arrive in an unknown land with your two little girls not knowing if myself or the twins would survive the birth. I tried to be strong but I can say I have never been more scared in my life. The planned day of the birth arrived December 2, 2009 and I was at 34 weeks gestation. Coincidently the boys due date was in fact my birthday, the 10th January 2010!!! The night before the birth I spoke with my little girls and explained that I may not be able to see them for a few days as their little brothers were going to be born. It was hard for me to explain as I did not know myself the outcome we would have, and it was also hard for the girls to understand. I was terrified I would not see my little girls again if something went wrong and I was so scared the boys would not make it … how could I explain that to the girls. We prayed for the best. On the morning of December 2, 2009 I walked down to the theater for my planned cesarean section. It was full of medical staff and I nervously joked to my husband that had I known there would be this many people at my birth I would have sold tickets!! I could see he was so worried about me. The birth seemed never ending but at last at 10:21 AM Hassan and Hussein were born. I felt them been lifted out of me and it was music to my ears to hear them cry. Pat O Brien, my obstetrician and a fellow Cork man I am proud to say, instructed his team to “show ‘mum’ the babies” briefly before they were whisked away to an adjoining room to be checked. I cry now, writing this as it was such a difficult time. I did not know if they were going to survive and I did not know if I would ever get to hold them. When they were taken out of my womb Hassanʼs arm was protectively around his brother Hussein, as if he was holding him. A month before the birth I had learned that they had only formed one leg each and it broke my heart as it was thought up until then that they had two legs each. So on the morning of the birth I sent my husband to check what limbs they had and to see how the babies were doing. He came back after 10 minutes with tears pouring down his cheeks telling me that the boys were alive but they had only one leg each and shared everything from chest to pelvis. I then had to have my stomach closed and stapled, and despite all the pain relief the pain was unbearable. I felt every pinch of every staple. I was brought to a recovery area and through the curtains I could hear other mums with their newborn babies and carefree laughter. The Childrenʼs Acute Transport team arrived shortly afterwards and the babies were prepared to be taken to Great Ormond Street Hospital NICU Department. The boys were wheeled up to my recovery bedside to say goodbye and I could not even reach them to give them a goodbye kiss or touch them. I insisted that my husband traveled to GOSH with the twins and I returned to an empty room. I waited 4 days before I was well enough to be wheeled onto an ambulance and driven to GOSH to meet my little twins for the first time. I was so overwhelmed when I saw them. They were just so beautiful and so perfect. It was hard for me to stand up to be level with their little incubator but with every bit of strength I had I stood there and proudly stroked my beautiful little boys. I had my first hold that day also and I could not bear to leave them and return to my own hospital again. The wonderful staff organized those visits over the next week until I was well enough to leave the maternity hospital. When the boys
261
were 10 days old I was discharged and I took my little girls in to meet their little brothers. It was a happy day. They asked me “how the babies were stuck together?” and quick thinking I decided to tell my little 5 year old girl that her little brothers loved each other so much that they were hugging each other all the time in my tummy and that is how they got stuck together-simply hugging too much! She laughed and accepted that and I felt it was a lovely way to explain it to the girls. We had professional family photos taken at Great Ormond Street Hospital that day of all of us together. We had made it through the birth. Sadly during this time my breast milk had dried up completely. It broke my heart as I had exclusively breastfed the two girls up until they were 2 years old and I had wanted to do the same for the twins. But due to us not having that skin to skin contact and bonding—as we were in separate hospitals the first 10 days of their lives, my milk had dried up. So I had to introduce myself to formula and bottles for the first time ever which was another very emotional thing for me. But the important thing was that the boys gained weight regardless of what milk they drank. The twins were well enough to travel back to Ireland just days before Christmas 2009 and we were secretly transferred to Cork University Maternity Hospital. The boys stayed in their neonatal department until they were full term and the staff there took great care of us. The media had started to ring GOSH and the Cork maternity hospital saying they had heard a set of “conjoined twins” were born so after hiding for almost 6 weeks in hospitals we decided to release our own statement announcing the twins birth and how proud we were of them. It was a very difficult time to go from being a regular quiet family to being on the front page of every newspaper. We handled it with great dignity I am told and we always made every decision with the same rule; that rule was “would the boys be proud of this when they are older?” It has guided us the whole way to do right by them. We had no finances at this time and obviously still had our mortgage and car loans but we decided to not accept the mediaʼs offers of an exclusive story and photos but instead to hire in our own photographer and to release the same photo of our family with our beautiful twins to all press. It has been the best decision we ever made. We enjoyed 4 wonderful months with our precious boys and it was decided that the right time for them to be separated was when they were 4 months old, so the separation was planned for the April 7, 2010; not a day I will ever forget. Coincidently, it was also the day the twins were conceived which I looked on as a great omen. We walked down to the operating theater with me holding my little bundle in my arms and my husband trying to hold me up as I could barely walk. I wanted to turn and run out the door with my beautiful boys and not let them face into a 14 hour surgery to separate them. We did not know if we would get one or both back and as I handed them over to the surgical team I almost fell down with the pain of letting them go. We had got to know them and love them so much and my little girl Malika asked me “why couldnʼt we leave them stuck together as they were beautiful and perfect the way they were.” But Mr. Kiely had explained to us that they would have no quality of life and would never walk. It was the hardest decision we ever made but we did it for the boys. I remember that day and how long it was. We were so scared with every passing minute but the team kept us updated every few hours. We spent our time reading the hundreds of cards from wellwishers and tried not to watch all the Sky News updates. I recall Mr. Kiely coming up to see us after 14 hours in theater to tell us that “the boys were both alive and brought separately to the Intensive care unit.” He looked exhausted and relieved. We fell to our knees with the relief of knowing our “little fighters” had won another battle. Mr. Kiely had warned us that it was one thing getting them out of the operating theater alive but
262
A. Benhaffaf / Seminars in Pediatric Surgery 24 (2015) 260–262
another to get them out of intensive care alive. Thank God they both survived and after just 1 month in intensive care they were put on a ward. Intensive care was a very hard place to be as it was touch and go a few times for both the twins. We were the lucky ones we were blessed that both twins survived. Over the next month back on ward we spoon fed the twins for the first time and it was so strange to have them in separate cots. We were running from one bed to another!! The first time the girls came to see the twins separated was very emotional. My younger daughter was only 2.5 years old and she could not understand where Hassan was as she was shown Hussein in his cot in intensive care. She kept prodding the space next to Husseinʼs head and asked “where is Hassan?” We pointed to Hassan in the cot next to us and she just could not understand it and she was quite upset for a while trying to get used to them being apart; as we all were. If I am honest at the start I did miss them being together. Since my first scan photo at 12 weeks they were always in the shape of a heart the way they were joined and now they were apart and for a while it was like the heart was broken. As the boys got stronger so did their little personalities! Hassan the obvious boss of the two and Hussein a bit more reserved and quieter! The boys miraculously recovered much quicker than other sets of similar conjoined twins and the best day of our lives was the day we returned back to Cork, Ireland on the Air Corps flight. Well-wishers had gathered at the airport cheering for the boys return and I could have kissed the ground that day I was so grateful that all six of us returned home. The Irish people were so proud of the boys and I feel we changed how people now saw “conjoined twins” which was what I had set out to do. As when I was pregnant and searched for positive outcomes and stories on “conjoined twins” on the internet I only found negative and upsetting reports. This is why we decided to make a
TV documentary on our journey to separation for other parents in the future to see that there is hope. We wanted to show people a positive and family side of the story behind having “conjoined twins.” The story of hope and family and unconditional love. I felt we achieved that. The documentary was beautiful and gave many parents hope in many different circumstances. The months and years that have followed have been hard; I will not lie! It has been full of highs and many lows but we have our boys and that is all that matters. My husband had to give up work to help me care for the twins full time as their lives revolve around physiotherapy, occupational therapy, many medical appointments and ongoing long-term surgery for Hassanʼs congenital scoliosis. But we do it together hand in hand and we will do everything it takes to get our precious boys to the next level. Hassan and Hussein are now learning to walk with prosthetic legs and life is a constant battle for these boys, but genuinely they are always happy boys and have such a love for life. It is impossible for me to explain the joy and the love they have brought into our lives. They have taught us so much about life and made us realize how precious it is. Hassan and Hussein have survived the impossible and their lives are far from easy but my “little fighters” have fought to be here and know how much they are loved by so many. It will be a hard journey ahead but we do it as a family of six and I will be forever grateful to Mr. Kiely and the staff at Great Ormond Street Hospital, UCLH Maternity Hospital London, Cork University Maternity Hospital, and for the many people who never gave up hope and prayed for our boys. I believe I was chosen to have “Hassan and Hussein”; they were a precious gift sent to us. The world is a much better place with them in it.
Contents lists available at ScienceDirect
Seminars in Pediatric Surgery journal homepage: www.elsevier.com/locate/sempedsurg
A parents perspective Angie Benhaffaf n “My Little Fighters” as I affectionately call them came into the World on the December 2, 2009 and they were joined from chest to pelvis sharing everything except the heart. It was an emotional pregnancy, a traumatic birth, followed by a 14 hour surgery at Great Ormond Street Hospital to separate my wonderful boys in April 2010. Hassan and Hussein are now 5 years old and typical little boys except they have a “superman leg”!! Let me share with you our amazing journey that reminds us all of the important things in life: which are family, hope, and unconditional love. On the July 2, 2009 our lives changed forever. We went for our 12 week ultrasound scan on my third pregnancy. I was accompanied by my husband and two little girls aged 2 and 5 years. We were all excited looking forward to seeing baby number three for the first time. The week before my first scan I confided in my close friend that I felt something was wrong with the baby as I just felt different to my previous pregnancies. My friend told me to stop worrying and that all would be fine, but I have always had good gut feelings on things and this worry just would not go away. I prayed all would be fine and the day of the first scan arrived. We all sat in the hospital waiting room waiting to be called in, and as my name was called my elder daughter needed to go to the bathroom so my husband said they would follow me in. I lay down on the bed with my younger daughter in her pushchair curiously watching everything. The sonographer squirted cold gel onto my tummy and with a worrying look I asked if she could wait till my husband came back as I was a bit scared. She asked why and I explained I was worried something was wrong. So she said she would get started and within 30 seconds of her scanning me I knew from her face something was terribly wrong. She told me to wait till my husband came back but I pleaded with her to tell me what was wrong with my baby. She softly told me “I am seeing two babies, but something I have never seen before … your babies are joined.” I cried out and begged for it to be a mistake. My husband and daughter came into the room and saw me heartbroken. I told “itʼs twins and they are joined together.” We both held our little girls and cried. We then went home and it was as if my whole world had fallen apart. I did not drink, I did not smoke, and I took my folic acid so why is this happening to me I asked over and over again. I rang my family GP and explained that I was carrying conjoined twins and if he knew anything about this as the internet was full of negative reports on the subject and I needed to find hope. By pure coincidence and faith, as I see it, he told me that a friend with whom he played rugby and went to the same college
n
Corresponding author. E-mail address: [email protected]
http://dx.doi.org/10.1053/j.sempedsurg.2015.07.007 1055-8586/& 2015 Elsevier Inc. All rights reserved.
was an expert in “conjoined twins” at Londonʼs Great Ormond Street Hospital (GOSH). So I rang Mr. Edward Kiely a week after learning my babies were joined and this incredible man gave me hope. Mr. Kiely spoke honestly to me and we kept in touch throughout the pregnancy to see how the twins were growing. For 6 weeks I went into a terrible dark place of sadness and pain. I did not want to eat or drink and I became so dehydrated my lips had started to bleed. The only time I left the house was for my weekly scans to see if my babies were still alive as it was thought they would die in the first trimester based on statistics. At my 20 week scan we had a heart specialist examine me as it was thought up until then that my precious twins shared everything including the heart. But thank God that day we found out they each had a heart and that my “little fighters” were boys! There and then at my 20 week scan I named my little duo “Hassan and Hussein.” I was so happy they each had a heart and it was the turning point in me going forward. My husband was so sad as he had longed for a son after having two daughters and yet here were two sons being dangled before him and it was thought neither would survive. I was happy knowing that my boys now had a better chance of survival as they each had a heart. From this day on I was determined to fight for my boys survival and will them to live. There were many sad days through my 34 week pregnancy but there were also some incredibly happy days. At 24 weeks gestation, accompanied by my family, I had a 3D scan which showed that the twins were alive and moving in my womb. I needed to do this as I wanted my little girls to have the chance of seeing their little brothers alive if the worst came to the worst at the birth. Again going on statistics many conjoined twins are either still born or can die shortly after birth. At that 3D scan we watched our little boys clasp each otherʼs hands in my womb right before our eyes. It was our miracle and it comforted me so much to know that no matter what happened the boys had each other. To this day I watch that incredible DVD that shows Hassan and Hussein clasp hands in the womb through their barely formed fingers and it fills my heart with love and hope. My little girls used to sing songs to my growing bump and talk to their little brothers. My elder daughter used to sing Michael Jacksonʼs song “You are not alone” to them and to this day she sings it for them. I feel the twins knew how much they were loved ever before they were born and they fought to survive. The maternity hospital in Cork, Ireland near to where we live gave us wonderful care throughout the pregnancy but told us the birth was too high risk to carry out in Ireland and that we would have to travel to London for it. This scared us greatly as we did not know anybody in London and felt it would be a very lonely place for us to be but I was so wrong. We met the most incredible people
A. Benhaffaf / Seminars in Pediatric Surgery 24 (2015) 260–262
at Londonʼs University College Maternity Hospital (UCMH) who have remained close friends to us. But the most important thing to us was that our babies had the best chance so on the November 30 my husband and my two little girls took a flight to London not knowing what lay ahead. We arrived at UCLH maternity hospital and very few people knew of our arrival there as they were keeping it strictly private for fear the media would find out about our little twins, as “conjoined twins” seem to create such huge interest in the media. It was honestly a terrifying experience to arrive in an unknown land with your two little girls not knowing if myself or the twins would survive the birth. I tried to be strong but I can say I have never been more scared in my life. The planned day of the birth arrived December 2, 2009 and I was at 34 weeks gestation. Coincidently the boys due date was in fact my birthday, the 10th January 2010!!! The night before the birth I spoke with my little girls and explained that I may not be able to see them for a few days as their little brothers were going to be born. It was hard for me to explain as I did not know myself the outcome we would have, and it was also hard for the girls to understand. I was terrified I would not see my little girls again if something went wrong and I was so scared the boys would not make it … how could I explain that to the girls. We prayed for the best. On the morning of December 2, 2009 I walked down to the theater for my planned cesarean section. It was full of medical staff and I nervously joked to my husband that had I known there would be this many people at my birth I would have sold tickets!! I could see he was so worried about me. The birth seemed never ending but at last at 10:21 AM Hassan and Hussein were born. I felt them been lifted out of me and it was music to my ears to hear them cry. Pat O Brien, my obstetrician and a fellow Cork man I am proud to say, instructed his team to “show ‘mum’ the babies” briefly before they were whisked away to an adjoining room to be checked. I cry now, writing this as it was such a difficult time. I did not know if they were going to survive and I did not know if I would ever get to hold them. When they were taken out of my womb Hassanʼs arm was protectively around his brother Hussein, as if he was holding him. A month before the birth I had learned that they had only formed one leg each and it broke my heart as it was thought up until then that they had two legs each. So on the morning of the birth I sent my husband to check what limbs they had and to see how the babies were doing. He came back after 10 minutes with tears pouring down his cheeks telling me that the boys were alive but they had only one leg each and shared everything from chest to pelvis. I then had to have my stomach closed and stapled, and despite all the pain relief the pain was unbearable. I felt every pinch of every staple. I was brought to a recovery area and through the curtains I could hear other mums with their newborn babies and carefree laughter. The Childrenʼs Acute Transport team arrived shortly afterwards and the babies were prepared to be taken to Great Ormond Street Hospital NICU Department. The boys were wheeled up to my recovery bedside to say goodbye and I could not even reach them to give them a goodbye kiss or touch them. I insisted that my husband traveled to GOSH with the twins and I returned to an empty room. I waited 4 days before I was well enough to be wheeled onto an ambulance and driven to GOSH to meet my little twins for the first time. I was so overwhelmed when I saw them. They were just so beautiful and so perfect. It was hard for me to stand up to be level with their little incubator but with every bit of strength I had I stood there and proudly stroked my beautiful little boys. I had my first hold that day also and I could not bear to leave them and return to my own hospital again. The wonderful staff organized those visits over the next week until I was well enough to leave the maternity hospital. When the boys
261
were 10 days old I was discharged and I took my little girls in to meet their little brothers. It was a happy day. They asked me “how the babies were stuck together?” and quick thinking I decided to tell my little 5 year old girl that her little brothers loved each other so much that they were hugging each other all the time in my tummy and that is how they got stuck together-simply hugging too much! She laughed and accepted that and I felt it was a lovely way to explain it to the girls. We had professional family photos taken at Great Ormond Street Hospital that day of all of us together. We had made it through the birth. Sadly during this time my breast milk had dried up completely. It broke my heart as I had exclusively breastfed the two girls up until they were 2 years old and I had wanted to do the same for the twins. But due to us not having that skin to skin contact and bonding—as we were in separate hospitals the first 10 days of their lives, my milk had dried up. So I had to introduce myself to formula and bottles for the first time ever which was another very emotional thing for me. But the important thing was that the boys gained weight regardless of what milk they drank. The twins were well enough to travel back to Ireland just days before Christmas 2009 and we were secretly transferred to Cork University Maternity Hospital. The boys stayed in their neonatal department until they were full term and the staff there took great care of us. The media had started to ring GOSH and the Cork maternity hospital saying they had heard a set of “conjoined twins” were born so after hiding for almost 6 weeks in hospitals we decided to release our own statement announcing the twins birth and how proud we were of them. It was a very difficult time to go from being a regular quiet family to being on the front page of every newspaper. We handled it with great dignity I am told and we always made every decision with the same rule; that rule was “would the boys be proud of this when they are older?” It has guided us the whole way to do right by them. We had no finances at this time and obviously still had our mortgage and car loans but we decided to not accept the mediaʼs offers of an exclusive story and photos but instead to hire in our own photographer and to release the same photo of our family with our beautiful twins to all press. It has been the best decision we ever made. We enjoyed 4 wonderful months with our precious boys and it was decided that the right time for them to be separated was when they were 4 months old, so the separation was planned for the April 7, 2010; not a day I will ever forget. Coincidently, it was also the day the twins were conceived which I looked on as a great omen. We walked down to the operating theater with me holding my little bundle in my arms and my husband trying to hold me up as I could barely walk. I wanted to turn and run out the door with my beautiful boys and not let them face into a 14 hour surgery to separate them. We did not know if we would get one or both back and as I handed them over to the surgical team I almost fell down with the pain of letting them go. We had got to know them and love them so much and my little girl Malika asked me “why couldnʼt we leave them stuck together as they were beautiful and perfect the way they were.” But Mr. Kiely had explained to us that they would have no quality of life and would never walk. It was the hardest decision we ever made but we did it for the boys. I remember that day and how long it was. We were so scared with every passing minute but the team kept us updated every few hours. We spent our time reading the hundreds of cards from wellwishers and tried not to watch all the Sky News updates. I recall Mr. Kiely coming up to see us after 14 hours in theater to tell us that “the boys were both alive and brought separately to the Intensive care unit.” He looked exhausted and relieved. We fell to our knees with the relief of knowing our “little fighters” had won another battle. Mr. Kiely had warned us that it was one thing getting them out of the operating theater alive but
262
A. Benhaffaf / Seminars in Pediatric Surgery 24 (2015) 260–262
another to get them out of intensive care alive. Thank God they both survived and after just 1 month in intensive care they were put on a ward. Intensive care was a very hard place to be as it was touch and go a few times for both the twins. We were the lucky ones we were blessed that both twins survived. Over the next month back on ward we spoon fed the twins for the first time and it was so strange to have them in separate cots. We were running from one bed to another!! The first time the girls came to see the twins separated was very emotional. My younger daughter was only 2.5 years old and she could not understand where Hassan was as she was shown Hussein in his cot in intensive care. She kept prodding the space next to Husseinʼs head and asked “where is Hassan?” We pointed to Hassan in the cot next to us and she just could not understand it and she was quite upset for a while trying to get used to them being apart; as we all were. If I am honest at the start I did miss them being together. Since my first scan photo at 12 weeks they were always in the shape of a heart the way they were joined and now they were apart and for a while it was like the heart was broken. As the boys got stronger so did their little personalities! Hassan the obvious boss of the two and Hussein a bit more reserved and quieter! The boys miraculously recovered much quicker than other sets of similar conjoined twins and the best day of our lives was the day we returned back to Cork, Ireland on the Air Corps flight. Well-wishers had gathered at the airport cheering for the boys return and I could have kissed the ground that day I was so grateful that all six of us returned home. The Irish people were so proud of the boys and I feel we changed how people now saw “conjoined twins” which was what I had set out to do. As when I was pregnant and searched for positive outcomes and stories on “conjoined twins” on the internet I only found negative and upsetting reports. This is why we decided to make a
TV documentary on our journey to separation for other parents in the future to see that there is hope. We wanted to show people a positive and family side of the story behind having “conjoined twins.” The story of hope and family and unconditional love. I felt we achieved that. The documentary was beautiful and gave many parents hope in many different circumstances. The months and years that have followed have been hard; I will not lie! It has been full of highs and many lows but we have our boys and that is all that matters. My husband had to give up work to help me care for the twins full time as their lives revolve around physiotherapy, occupational therapy, many medical appointments and ongoing long-term surgery for Hassanʼs congenital scoliosis. But we do it together hand in hand and we will do everything it takes to get our precious boys to the next level. Hassan and Hussein are now learning to walk with prosthetic legs and life is a constant battle for these boys, but genuinely they are always happy boys and have such a love for life. It is impossible for me to explain the joy and the love they have brought into our lives. They have taught us so much about life and made us realize how precious it is. Hassan and Hussein have survived the impossible and their lives are far from easy but my “little fighters” have fought to be here and know how much they are loved by so many. It will be a hard journey ahead but we do it as a family of six and I will be forever grateful to Mr. Kiely and the staff at Great Ormond Street Hospital, UCLH Maternity Hospital London, Cork University Maternity Hospital, and for the many people who never gave up hope and prayed for our boys. I believe I was chosen to have “Hassan and Hussein”; they were a precious gift sent to us. The world is a much better place with them in it.