Since 2007 Puspa Shahi has lived in the UK presently in Wales in an army accommodation with her husband, Mr Kaushal, a Gurkha and two young children. The Nepali community in her area is quite close. It consists of about 5O army families. There are often programs to get together, e.g. ladies nite, coffee mornings and the traditional festival parties. They usually meet every week, for coffee mornings and they have huge parties during the festival periods where the whole battalion gets together.
Puspa’s dad was a Gurkha. He worked for the Singapore Police Force and due to this Puspa has been in Nepal for less than two years of her life. Puspa’s father-in-law was in the British Army as well. They are permanent residents and come to the UK on a regular basis. Puspa is the eldest in her family of four siblings. Her second sister is also in the UK, married to a Gurkha. Her mum has always been the strongest person in her family. She is always very positive in life and religion. Her dad was the hardworking breadwinner of the family and served in the Police force for 25 years. Puspa’s husband is the only son in his family which means there is a great deal of pressure to succeed and carry on the family line.
Before Puspa’s son was born, she was working in a hospital as a Trainee Associate Practitioner and was doing her Foundation Degree in Health and Social Care. Puspa is currently on maternity leave but will not go back to work due to her son Kaiden’s diagnosis of Down syndrome as he needs regular appointments and early support intervention.
Puspa feels that it is better for her and her family to stay in the UK as Kaiden will need lots of support and services which she feels are available. Although, Puspa feels that there will be discrimination everywhere, her thought is that Kaiden will get better opportunities in the UK than in Nepal. Puspa says that, “There are disability facilities everywhere we go in the UK, so it is easier to find support (than in Nepal)”.
Puspa feels that her son’s diagnosis has been her biggest challenge in life.
“I am not afraid of his diagnosis but have fear for his future. Although there are supports here, somewhere along the line, I know everyone with special needs will be stared at by other people or even discriminated against. Recently, I realised that the difficult part was making my own community understand. There have been both negative and positive comments when he was born. Even as parents, initially we had a lack of understanding about what Down syndrome is. Therefore, we misunderstood when negative comments were made. There were some who asked me directly, whether I was on pills unknowingly when he was conceived?; Didn’t I take good care of my health when i was pregnant as I was working as well?; Didn’t I eat enough nutritious food? All those comments hurt when we were still trying to cope with the new diagnosis. But we reminded ourselves that they lacked anunderstanding of DS and were not be blamed. But even after telling them that it happened during conception and it has no relation to what I did or ate before or during pregnancy, somehow I just felt that some of them may still have doubts. As in Nepal, that’s how the older generation says blaming the mother for it or even saying that I might have done something in my past life and that’s why I have a child who is abnormal now. For once I felt, I am glad I am not in Nepal now.”
“I remind myself every day that any child born is special and that they are here for a reason. I have vowed to raise awareness for DS and have already set up my own FB page for it. It was not our fault our Kaiden was born this way. I am not ashamed of him and I choose to talk and tell everyone about his diagnosis. It’s so easy to talk to the British here about his diagnosis without having to explain that we are not to blame for his DS. During this difficult time, the British people have been great, giving us that positive support that we needed at this time than rather blaming us which I get more from the older generation of Nepalis.”
“I had about 10 scans in my nine months of pregnancy and with my husband being away at war at those times it was difficult. My in-laws were staying with us. They were a great help during those times as I also have a five year old daughter, Anouska. In the UK, we have two routine checks at first and during the second trimester. Those at high risk for DS are given the choice of having amniocentesis with the risk of miscarriage. However, with me being at low risk of 1:800 chance, I was not offered amniocentesis. Although, my scan results did show some possibility of abnormality initially with short limbs and high fluid around the baby, signs of DS, it always come back as normal when the scans were repeated. But, I always had doubts and felt an instinct that this baby was not going to be normal. When i told my in-laws and my friends about my instincts, they always scolded me as being a negative person. Whatever it was, i was preparing myself for an abnormal baby although the scans were showing normal right till the last scan at 40 weeks when it showed that my baby had stopped growing at 35 weeks and I had to be induced.”
“The doctors were surprised saying I was low risk and had no complications during my first pregnancy with Anouska. Well Kaiden was born on the 4th June 2013 by forceps delivery. When I first looked at him, I was surprised because he looked normal but I still didn’t believe. Nobody said anything at that time. We had friends congratulating us and of course proud grandparents at home especially my in-laws as it was their first grandson. Who could have known that it would be short-lived?”
“The nurse in the ward was getting us ready for discharge and before that a pediatrician would have to see him. When she arrived, she said he is floppy and he was not feeding well. He was sleepy. I just thought, well he stopped growing at 35 weeks and that’s why he is floppy and tired from the labour. She said she will have to get her consultant to have a look at him. And that’s when; we were hit with his diagnosis.”
I still remember that day vividly. Chills ran through my spine when he mentioned about the possibility of DS while Kaiden needed to have further testing for confirmation. I told myself deep inside, I know he has DS. Why didn’t anyone listen to me when I said he might be abnormal then and with so many questions and guilt inside, I was at my worst end. My husband was the greatest pillar at that time and I had never felt that coming from him before.”
“With us there was a general lack of understanding about it and with no information about DS, we were left to wait for the results. It was even harder when our son had to be admitted to the ICU as his oxygen level was low and with further heart scans, it was found he had a small hole in his heart. As he was not feeding well and had low blood sugar, he needed to have a feeding tube. Right after the diagnosis, It was difficult to watch him without crying. I kept blaming and telling myself what have I done? I wished at that time I was given leaflets about Down syndrome. Informing family and friends was difficult, telling them we were waiting for the results and everybody was positive that everything will be ok. I think I was the only one who was negative again telling everyone, I am very sure he has DS.”
“I was preparing myself. After three days, the initial results came and showed that Kaiden had DS.I felt relieved and everybody else was shocked. My husband was hit the hardest, because deep inside he was still hoping the results would come back negative. My mum, being the strongest and the most religious person in our family said she has given up on God. It was now my turn to comfort everybody as I had already prepared myself for the news. At this time, I didn’t know how strong I was until I had Kaiden. God knew I could cope. My trust in God didn’t diminish. Instead, I believe in him more. God does not make mistakes. Kaiden came here for a reason.”
“The consultant came with so many leaflets and we could ask questions. First thing he said was, it was not our fault and it was due to extra chromosomes during conception which I was so glad to hear that. I wished all this was done a bit earlier. Explaining to my parents and in-laws was difficult. They thought that Kaiden would be ok after saying some prayers and his diagnosis would be gone. I was very harsh with them, saying NO, NEVER in this life. His diagnosis will remain the same but if you wish to do prayers, ask for his good health and a good life maybe that would be answered. My parents are aware what his life would be, showing them lots of videos and pictures but I am not too sure about my in- laws. I just felt, they might not be ready to hear it at the moment and wanted to go slow with them , therefore I left my husband to educate them. My close friends were great in supporting us although most of them felt his DS would go away. Again I had to be harsh with them saying never to mention that to me as it won’t happen. It is in his blood, genes now”.
“I tried to go online and look for resources in Nepali to educate them and that’s when I met DR Lalita and Shila who are both trying to set up Centres in Nepal. Looking at the situation in Nepal, I feel I am so fortunate that i am in the UK with so many facilities and early intervention. My son will receive physio-therapy with some exercises for me to do with him at home and later on there will other healthcare professionals involved as well.”
“It has been three months since Kaiden was born. Although, he is still like any other normal baby, I remind myself every day that he was meant to be born and be brought up by us. I believe strongly that something positive will come out of this. We may not see it now but I am certain he will make everyone around him happy and blessed. I will keep educating whoever I come across about DS and will continue to do so all my life.”
“Setting up a Facebook page, helped me in a way to focus on his positive abilities and educate the public and also to get support. Having a DS baby is like taking the long route to reach his dreams and aim. He may be slow, but that doesn’t mean he won’t be able to make it. He will eventually and will teach people not to give up”.