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 ….
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 to give him his bottle, the more he felt sick because he just did not want the milk. I did not realise that the condition was to blame. I thought I was either not doing my best as his mum or he was being lazy.
What could have been done better?
I think that more could have been done to educate me about what a gastrostomy was rather than rely on the fact that I would find out. I could not. I was caring for my son night and day and had no chance. I had also stopped reading Internet articles because they depressed me when I read anything related to my son’s health and his prognosis.
I wish that a leaflet were made available to me at the start of the suggestion regarding a gastrostomy insertion. I do not think that my decision to refuse the gastrostomy, which subsequently delayed my consent, was an informed one. I feel the doctors could have done more to support me by providing more information. I later consented after attempting to collate evidence that he needed the gastrostomy myself. I independently charted his feeds, bowel movements and recorded his crisis episodes by keeping a journal. As a result of my absolute petrification, I wanted to prove to myself that there was an absolute need for the procedure. It took me a few months to get enough evidence to convince myself that he needed one.
Sadly the doctors were the medical experts, they could have given me more information. I appreciate that health care professionals have to respect the decisions of families regarding their children, however, there should be a time when they can advocate for the patient by ensuring that the decisions they respect which families make are based on real information rather than fears. I believe that this is key if the best interest of the child will be upheld at all times.
Otito later had the gastrostomy and it improved his quality of life. He was no longer under pressure to feed because he had his gastrostomy as a back up. In the end after his condition deteriorated further and led to an oral aversion, the gastrostomy became the only means of feeding him. I have now learnt that although we are experts on our children, we also have to acknowledge that doctors are health care experts too.
Signposting should be an essential element that all health care professionals should adopt in their practice.
Tell parents where to get information. Recognise the fear the internet can pose to parents when searching for information about their children’s illnesses or treatment options. The internet is a huge resource that can also be filled with very negative stories. Some families avoid it for this reason. It may be more useful to provide families with specific links to websites and resources.
Do not assume that parents will find out about information. Recognise the constraint that care imposes on families and try to find ways to support them
Follow up during appointments on signposted advice to see if the families have accessed them
Tailor the information delivered to suit families. Assess the education and information appreciation level of a family. Some families have access to the Internet, some are information savvy while others are not. For example, decide when to provide a leaflet or an Internet link to an online resource.
Revisit old suggestions to open communications regarding old options. Families change their minds as illnesses progress based on the dynamic and peculiar impact of the condition on their child. Revisiting old options give families the opportunity to reconsider their stand. It also gives the health care professional the opportunity to provide evidence-based suggestions that can help families make informed choices.
Timing of information delivery is essential. Choose an appropriate time to give information. It may be a good idea to give further details regarding treatment options when families are more settled during routine clinic appointments rather than when they are admitted for planned or emergency operations.
Thank you very much for reading.