Daily Archives: August 22, 2018


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I was asked to write an article recently titled “Understanding me”. It was a positive request borne out of the curiosity of particular groups of health care staff who cared for our son Otito. I have published it because we hope that it can give others who care for families and their children with complex health needs insights into how confusing it can be for those families. Families place a great deal of trust in health care professionals (HCPs). Sometimes, for legal reasons, HCPs take step back from families who need their crucial input when making crucial decisions about the care of their loved ones. This is the era of human rights and they don’t want to be seen as pushy. If you read the article further, you will see our case study as a family and how it would have made a huge difference to us if our HCPs steered us in the right direction rather than handing the reigns over to us. We had absolutely no clue what we were doing. Why were they asking us to decide? After all, they were the professionals.   I later got to learn that parents are the best professionals with regards to the care of their loved ones. When this statement is made, what is taken for granted is that professionalism comes from experience. Yes today, I can say, I am… or rather we as a family were experts with regards to all things pertaining to Otito. However, at the start we were absolutely clueless. It was very scary for us as a family to find ourselves being left to make decisions about if Otito needed to have various key procedures or not… you know, that thing called consent. I hope you find this article useful. Well. without any further ado, lets begin the article ….   UNDERSTANDING ME   When our son Otito was born, little did we know about what lay ahead. He had been diagnosed with a metabolic condition called propionic acidaemia and it made his body unable to break down his proteins properly. It made him very sick because his body built up dangerous toxins called ammonia instead. As a mother, I felt extremely overwhelmed by the whole situation.   What went well? After he was born, he needed to have a dialysis to clean his blood and reduce the Ammonia levels. He was only 3 days old. I think that the medical staff realised that we were extremely anxious. Most of the staff were very patient with us and answered most of our questions. One particular nurse asked us to take photos to show him when he was older. I thought that was a positive statement because seeing him with all the tubes and machines made me constantly feel that he was going to die. I could not imagine how someone so little would survive all the poking and prodding from all the staff. It was not what I had envisioned his first few days of life to be. I kept being told by staff that it was for the best.   I said very little at the time but I was very impressed at how members of staff were sensitive to my unexpressed feelings. They explained every process to me. Most of the staff went beyond looking after my son and extended some of the care and attention to me. This made me feel very happy and valued. I had delivered him through a caesarean section. One morning, a nurse on duty asked me how I was feeling. Upon realising that I did not have a natural birth, my hospital hotel room was changed to one with a lift access to ease the stress of using the stairs. I felt very well supported and more able to contemplate a life with a sick child.   What did not go well? Subsequent months made us realise the extent of our son’s ill health. I thought that the staff did not do enough as the months progressed to prepare us for what to expect. Otito struggled to keep up with his calories on a daily basis. He needed to consume a fixed minimum amount of calories daily to provide his body with enough energy. The problem with the inability of his body to use proteins was not limited to his diet. When his body attempted to use his own body’s proteins, it also encountered the same problem. His body also built up toxins instead of converting the proteins into energy. Not keeping up with this daily minimum calories made him very unwell.   His consultant suggested that he needed a gastrostomy to help him maintain the minimum calorie requirement. I had never heard of a gastrostomy before. As a result, I could not contemplate a life for my son with a hole in his stomach. All I could see every time I was told about this device was the big hole that will be on his stomach and so I declined.   What was important to me? As a parent, information was very important to me. I found it very hard to build trust with health care professionals easily because I had been let down a few times within the first few months as a carer to my son. I was very protective. I just kept being told about what my son needed and at the same time, I was told that the decision was up to me. It was an intimidating position to be in. Here I was as a novice mum to a sick child (with a condition I could not pronounce) being made responsible for something as important as his nutrition.   I was very scared of getting it wrong. I saw the idea of accepting the gastrostomy as synonymous with accepting defeat. I did not want to give up on my son’s ability to feed. I was properly informed about the fact that it was his medical condition worsening his appetite. The more I tried […]

Understanding me … not just me but our needs as a family with a sick child.