Breaking the Silent Barriers (BSB) - Sapna Dabade
Parenting is no easy task and when it’s a special child, then the process immeasurably more challenging and life excruciatingly difficult. Opening up her journey to us in this article today is Sapna Dabade.
It was back in 2005, we were still finding our way to settle down in a new country when I first conceived. I was 25 and scared about the entire journey. With this being our first child, it was our decision for me to move back to India, in my second trimester, to my native city so I could have the support of my parents. I was consulting a family physician and gynaecologist who had delivered almost all the children in the family. I had just completed my third trimester and visiting my gynaecologist. I was examined and then to my utter shock, I was informed that she had inserted a tablet to kick start the labour induction. I was asked to go home and return only when the contractions set in. Later that evening, I started feeling uneasy and without my husband around, we decided it was safer to get admitted, rather than waiting for the contractions to get stronger and rush to the hospital in the middle of the night. I was admitted but to our surprise, there was no medical monitoring of my condition. No one came to see how I was doing all night. By early morning, there was still no sign of any contractions, but I was uneasy. One of the hospital attendants/ midwives then took me to the labour room and suggested that they would break my water to augment the labour. The water was broken and I was asked to push. There was no sign of the doctor and I continued to ask for the doctor. At this point, we were in a panic state and my mother noticed the baby’s head and sent out an urgent shout to call for the doctor immediately. A small incision later, they managed to pull him out – My Shraunak was born! Unlike any normal baby, he was not crying and his skin was blue. He was immediately taken to the Neonatal Intensive Care Unit, where he spent the next 12 days, struggling to survive.
The fact that he did not cry and his skin turning blue kept haunting us and we asked the doctor what could be the reason. We never got any plausible explanation. We finally got his discharge and after spending the initial 4 months under my parent’s care, we were back in Singapore with no clue of what was to come.
Shraunak was 5 months old and I was at the children’s clinic for his immunization when the paediatrician realised something was amiss. She immediately asked me to call for Shraunak’s father as she must have realised this was a grave diagnosis. A diagnostic MRI revealed Shraunak was brain damaged, a result of Perinatal Asphyxia, a birth injury caused due to oxygen deprivation during birth. Now we knew why he was born looking blue. We were shocked, speechless and traumatized on being informed that Shraunak would probably not develop normally like other children but face developmental issues. I felt like I was thrown in a deep, dark pit, all alone with a multitude of questions bubbling in my mind, the foremost of which was “what was life and future going to be like”. Totally unaware of what was happening to our baby, our entire focus was on finding the best possible treatment to reverse the damage. So, we ran from pillar to post, consulting various specialists.
A very normal, happy start to parenthood, suddenly became a rollercoaster ride with Physiotherapy sessions for the little one as well as hyperbaric oxygen therapy, essentially an attempt to reverse any brain damage by putting the infant in a hyperbaric oxygen tank, a therapy intended to expose the child to a 100% oxygen environment and to flood the body with as much restorative oxygen as possible. While this may have been too late, we did not give up and continued with all the suggested recommendations from various hospitals. Unfortunately, the damage was irreversible. Shraunak was diagnosed with Cerebral Palsy.
I felt a sense of helpless despair. A feeling of rage at times over my decision to return to India for my delivery and thoughts of how different life may have been if not for that one fateful day. One moment of negligence from the caretakers and a life gone from dreams of a normal family to total trauma. At no point did I ever go through the feelings of “why me” as our focus and priority was to find a solution. Today Shraunak goes to Cerebral Palsy Alliance Singapore, CPAS, a social service organisation that provides him with special education, focusing on empowering him to reach his full potential.
The biggest hurdle and challenge was accepting the reality that our child is a special child, to let the grand parents know that their first grand son is special. There was frustration about the unclear future since it’s too early to plan anything. There is a constant anxiety about his future, accompanied with fear and worry about Shraunak’s pain and suffering. We are constantly facing the questions of whether as parents we are doing enough or doing the right things to help him.
There are occasions when we face parental jealousy and resentment of those with “normal” children. There is a feeling of isolation because shraunak’s disability prevents him from successfully participating. My heart breaks on numerous such occasions when I wish for a different life for my child. To plan for a second child was another challenge in life. Faced with the uncertainty with Shraunak’s future, it took a lot of courage on our part to plan for a second child but this time I was not taking any chances and opted for a c section to be blessed with Spruha, our second child. Life is not perfect but it’s complete.
What is immensely hurting is when we encounter criticism and judgment of our parenting from others who don’t understand our child’s disability. When I see children of his age, there is an agony I can’t explain. As a mother I hope to see my child walk someday. It’s just one of my prayers for him. Life is not easy with a special child. He needs people around him and yet is scared of crowds. Our focus is on keeping him comfortable and not make life too complicated for him.
With a special child, as parents we tend to scramble around finding the best possible medical intervention, schools and therapies for our child, in the process ignoring a lot of things normal parents take for granted. Friends and other relationships take a back seat. What one could do to help a known family is just be there to ensure there is no feeling of isolation. I know the future is unpredictable and bleak but the fact remains, it’s a life we have been blessed with and we are in it together. I am forever grateful to my family, friends and tribe that stuck with us through our difficult times, never letting us down. If you want to offer help, then consider some understanding. We don’t need to be judged! Sapna Dabade Sapidream@gmail.com
The fact that he did not cry and his skin turning blue kept haunting us and we asked the doctor what could be the reason. We never got any plausible explanation. We finally got his discharge and after spending the initial 4 months under my parent’s care, we were back in Singapore with no clue of what was to come.
Shraunak was 5 months old and I was at the children’s clinic for his immunization when the paediatrician realised something was amiss. She immediately asked me to call for Shraunak’s father as she must have realised this was a grave diagnosis. A diagnostic MRI revealed Shraunak was brain damaged, a result of Perinatal Asphyxia, a birth injury caused due to oxygen deprivation during birth. Now we knew why he was born looking blue. We were shocked, speechless and traumatized on being informed that Shraunak would probably not develop normally like other children but face developmental issues. I felt like I was thrown in a deep, dark pit, all alone with a multitude of questions bubbling in my mind, the foremost of which was “what was life and future going to be like”. Totally unaware of what was happening to our baby, our entire focus was on finding the best possible treatment to reverse the damage. So, we ran from pillar to post, consulting various specialists.
A very normal, happy start to parenthood, suddenly became a rollercoaster ride with Physiotherapy sessions for the little one as well as hyperbaric oxygen therapy, essentially an attempt to reverse any brain damage by putting the infant in a hyperbaric oxygen tank, a therapy intended to expose the child to a 100% oxygen environment and to flood the body with as much restorative oxygen as possible. While this may have been too late, we did not give up and continued with all the suggested recommendations from various hospitals. Unfortunately, the damage was irreversible. Shraunak was diagnosed with Cerebral Palsy.
I felt a sense of helpless despair. A feeling of rage at times over my decision to return to India for my delivery and thoughts of how different life may have been if not for that one fateful day. One moment of negligence from the caretakers and a life gone from dreams of a normal family to total trauma. At no point did I ever go through the feelings of “why me” as our focus and priority was to find a solution. Today Shraunak goes to Cerebral Palsy Alliance Singapore, CPAS, a social service organisation that provides him with special education, focusing on empowering him to reach his full potential.
The biggest hurdle and challenge was accepting the reality that our child is a special child, to let the grand parents know that their first grand son is special. There was frustration about the unclear future since it’s too early to plan anything. There is a constant anxiety about his future, accompanied with fear and worry about Shraunak’s pain and suffering. We are constantly facing the questions of whether as parents we are doing enough or doing the right things to help him.
There are occasions when we face parental jealousy and resentment of those with “normal” children. There is a feeling of isolation because shraunak’s disability prevents him from successfully participating. My heart breaks on numerous such occasions when I wish for a different life for my child. To plan for a second child was another challenge in life. Faced with the uncertainty with Shraunak’s future, it took a lot of courage on our part to plan for a second child but this time I was not taking any chances and opted for a c section to be blessed with Spruha, our second child. Life is not perfect but it’s complete.
What is immensely hurting is when we encounter criticism and judgment of our parenting from others who don’t understand our child’s disability. When I see children of his age, there is an agony I can’t explain. As a mother I hope to see my child walk someday. It’s just one of my prayers for him. Life is not easy with a special child. He needs people around him and yet is scared of crowds. Our focus is on keeping him comfortable and not make life too complicated for him.
With a special child, as parents we tend to scramble around finding the best possible medical intervention, schools and therapies for our child, in the process ignoring a lot of things normal parents take for granted. Friends and other relationships take a back seat. What one could do to help a known family is just be there to ensure there is no feeling of isolation. I know the future is unpredictable and bleak but the fact remains, it’s a life we have been blessed with and we are in it together. I am forever grateful to my family, friends and tribe that stuck with us through our difficult times, never letting us down. If you want to offer help, then consider some understanding. We don’t need to be judged! Sapna Dabade Sapidream@gmail.com
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