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Hannah was born August 1995, our second of four children and our only daughter. We were elated that our second child was a little girl. However, our world came tumbling down when shortly after her birth, we were told that Hannah had Down’s Syndrome. This came as a massive shock to us. Within a month of her birth, it was discovered that Hannah also had a heart defect. This too came as a massive shock as it was not detected beforehand. We were told that Hannah would need a pulmonary banding once she reached a certain weight and was therefore fitted with a nasal gastric tube for feeding which she had for twelve months. Unfortunately, at three months old Hannah contracted bronchiolitis and double pneumonia which resulted in her being hospitalised for 7 weeks. During this time, Hannah had the pulmonary banding. She was seriously ill and we nearly lost her twice. Her first Christmas was spent in hospital. We were later informed that Hannah would need further surgery but because her heart condition was complex corrective surgery may not be successful resulting in her requiring a heart transplant in her teenage years. Again, another massive shock and upset for the whole family.


The first twelve months of Hannah’s life was turbulent and very stressful to say the least. Hannah began to walk aged three, just before she was due to start nursery. We found a mainstream nursery which was willing and able to offer Hannah the support she needed as she was only just mobile. Hannah later left the nursery and began to attend the same primary school as her brother. This was all a very new experience for the school. I must say the school were fantastic in supporting us and Hannah. However ,it didn’t come without it’s worries and concerns for some teachers who had never dealt with a child like Hannah. At the end of one school year a teacher told us how she had been very anxious about having Hannah in her class, even though Hannah had support. She was full of tears when she said what an absolute joy it had been having Hannah and what a wonderful experience it was for Hannah’s peers. Some of the parents also commented on the positive experience their children had in being with Hannah. Hannah had her second heart operation aged five. At this time the hospital were unable to advise us exactly what they were going to do. The best option would be a repair but there was still a huge doubt if this was possible. Fortunately, it seemed a miracle had happened as they were able to perform corrective surgery.


Hannah attended a mainstream secondary school, with support. She also formed links with a special needs school whilst she was there, attending some lessons. It was during this time that the special needs school invited Hannah attend their dance classes after school. Hannah also started to attend a local inclusive youth club two evenings per weeks. As time went by, it became evident that the ‘gap’ between Hannah and her peers was becoming ever wider. After lots of thought, we took the decision to move Hannah to the special needs school for her sixth form years. We were very unsure how this would work out, but Hannah fitted in perfectly and made many friends. She had so many more opportunities and engaged in more extra-curricular activities. It was lovely to see her so happy. She thrived in this environment. We certainly didn’t want her to leave and were all very sad when she had to move on. Her leaving prom was an especially significant moment for us. Hannah now attends a mainstream college in a supported learning environment. She is about to begin her fourth year and start a diploma in Catering, something she really enjoys and obviously we feel this also offers her an important life skill. We recently attended a supported learning graduation ceremony at the college. It was wonderful to see Hannah with so many of her friends and how they all support each other.


Hannah has always led a very active social life attending Rainbows, Brownies and Guides and dance classes when younger. She has attended the same youth club for several years and has made many friends there. She now dances with Freefall Dance Company, part of Birmingham Royal Ballet. 


Hannah has a lovely, caring nature and a wicked sense of humour. Hannah also loves spending time with all her family and being ‘mother hen’ to her three brothers. She can hold her own too! As a result of early respite care, Hannah has an extended family that she has been going to for many years. The family has grown and Hannah has enjoyed seeing many children come along. They all love Hannah and she is very much a part of their family too, which is just so lovely.


Having Hannah in our lives has certainly meant we have travelled a slightly different path than expected. Having a child with special needs has often been explained as being like getting on an aeroplane to your chosen destination but ending up somewhere completely different. As parents you learn to navigate your way around unfamiliar surroundings and get to know and love your new destination. Hannah has enriched our family in so many ways. We have experienced and learned so much more than we otherwise would have. Thinking back to when we questioned a doctor what we could expect for Hannah’s future. He said it was up to us to “write the book”. We think we are on to a bestseller with many more good chapters to follow!!!

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