NHS Blood Transfusion Talk : A Parent’s perspective on Blood Transfusion


Hello everyone. I gave a talk about blood transfusion in February 2017. It was a parents’ perspective on the whole process. It was an honour to be invited to present my views in a gathering of intellectuals. This is one of the talks closest to my heart. You see, coincidentally, after the talk on Thursday the 2nd of February 2017 at the Birmingham Metropole, Otito haemorrhaged and subsequently crashed on Sunday the 5th of February 2017. It was really weird for us as a family. He bled out because his pancreas failed. I have never seen so much blood being given to one little person in my entire life sincerely. It was surreal. There I was talking to this group of people about why blood transfusion was amazing, life saving and all without realising what was lurking in the corner.  He must have received nearly 20 bags of different types of blood products (without exaggerating) over the course of the 2 weeks that he spent in the intensive care. The fact that he still passed away in the end made it difficult for me to talk about the experience.

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Well, today, more than one year later, I feel really able to share with you my story about why blood transfusion is wonderful. I know there are very many varied opinions about if this should be done – especially from religious, traditional and cultural points of view. I acknowledge them but I must put forward my case in support of blood transfusion. Had it not existed, not only would I have missed out on sharing the life of my little warrior for as long as we did in the end but I would have lost him on that very Sunday that he haemorrhaged. I know it sounds silly and he never woke up anyway but you see, having the option of transfusing blood bought the doctors more time to try to save my son. It also gave me the opportunity to gradually come to terms with the possibility of a life without him. If I had not had those 2 weeks to read him his favourite stories, sing him his favourite songs, play his favourite music compilation to him, I would never have been able to accept his depature.

Thanks to all the hardworking people who work tirelessly to make this process happen. Thanks to those who establish systems that make the process safe. You are all heroes and as a parent, I am extremely grateful. So please I hope that you enjoy the piece. At the end, I also added a link to the feedback and comments from the day. Enjoy!

BLOOD TRANSFUSION TALK

Paediatric and Neonatal Transfusion programme

My near initiation as it were into being a blood transfusion recipient was actually a few years ago after a caesarean section. I remember being told that my blood count was very low and being prepared about the likelihood of getting one.

My first feeling was that of horror. You see, I grew up in sub-Saharan Africa where anything blood related is viewed rather superstitiously. Blood represented life. Important traditional contracts or covenants are sealed in blood. Blood could not be mixed without care. During marriages blood lines were traced even up to four generations to prevent incest. Royalty, warriors and servants were identified through blood lines. Discussions around blood were not done lightly.

Although a lot of civilisation has watered down many deep rooted traditional beliefs, myths and superstition, we still retain many fragments of the old African traditions and cultures. I felt that the blood discussion was best avoided.

The thought of having my blood mixed with that of a total stranger was disturbing. Despite my education and knowledge, I had always been unable to see the need for it. I also had bad memories of seeing blood transfusions go badly and this fuelled my anxiety too.

It was quite customary locally to blame subsequent infections or health complications arising post-transfusion on the “blood transfusion”. The mostly inadequate and weak health system could not provide any alternative answers and so locals demonised the whole blood transfusion process further fuelling the general aversion for blood transfusion.

As there was absolutely no confidence in most of the systems responsible for blood transfusion, relatives became the culprits and producers of blood in areas where blood banks were empty. Sadly, this led to the discovery of blood related diseases in such kind volunteers further leading to a sense of grief and misconception about blood transfusion. The local adage “what you don’t know won’t kill you” fuelled this rumour.

You can now imagine my horror at the mention of a blood transfusion. My thoughts were fixated on the lack of existence of any available relatives to provide blood for me. I would still not have wanted a stranger’s blood in my veins. Luckily, I escaped without needing a blood transfusion on that occasion because my blood count improved with medication.

Well a few days later, the son for which I had the caesarean section (Otito) was diagnosed with an inherited metabolic condition called Propionic Acidaemia which compromises his body’s ability to breakdown proteins. As I was dealing with that news, I got a call from the “heel prick” people to say that my son also had the sickle cell gene.

Well, without boring you with the details, somewhere along the line, there was talk about blood transfusion again only this time no amount of prayer, positivity or optimism could will it away. After a few months of life and having had several hospitalisations, he had to have a central venous line – a portacath.

It improved his quality of life drastically however, the consequence of that was that his blood had to be discarded each time a blood sample was taken. He also became more prone to line infections leading to even more sampling. Together with his sickle cell trait, he became a frequent candidate for blood transfusion.

In the last year he suffered a complication with severe chronic pancreatitis leading to gut failure. Now a TPN dependent feed nil-by-mouth child, his susceptibility to infections is made worse. In the last year alone he had 10 blood transfusions.

At this point, my guess is that you must now wonder how I have coped with “blood transfusion” which has now become part and parcel of my life. Even I too wonder sometimes how the girl spooked by the suggestion of blood transfusion to became the mum of a child dependent on blood transfusion.

Well, the answer is quite simple. It is all thanks to the work you do. This is how you have helped a mother like me cope:

  • There has been great communication by the teams in the hospitals that handle Otito’s care. There are systems in place that identified knowledge gaps in my family. The process and reason for blood transfusion is always thoroughly explained by the healthcare professionals. The existence of countless leaflets on the subject has made the process easier to digest. So I find that even after meetings with doctors, the leaflets cover other areas which have helped burst all my myths, explain any niggling areas and prepare me adequately. In essence, we feel well supported through the process.
  • The process is transparent. What you see is what you get. I don’t feel like the doctors will try to bring my child to harm. I trust them completely because they show a good grasp and understanding of the whole process. They are able to explain when blood products rather than a blood transfusion will be enough. This fuels my confidence as a parent.
  • The system of checks in place before the administration of the blood transfusion means that I do not feel I have to be present during the process. There are usually two nurses checking and cross checking each step of the process. This ensures that there are less errors for example giving the wrong blood to the wrong patient or giving the wrong blood type to the correct patient.
  • At GOSH there are computerised scanning processes added which makes the whole blood transfusion process feel very modern and up to date. I like that they have to scan the ID band of my son against the bag of blood. It helps to further reduce any errors.
  • I find the regular observation of my son during the blood transfusion to be superb. This means that I am also reassured that if there is any problem, it would be spotted early.

 

Knowledge they say is power. It was my lack of knowledge about the true meaning and essence of blood transfusion, my cultural background and inadequate medical systems that led to all my anxieties in the past.

So, on behalf of myself and every member of my family, I want to say a big thank you to all present in this room. Without your excellent work and tireless efforts at keeping my son’s blood levels normal through blood transfusions, he would not survive his treatment.

As promised, please click on the evaluation summary link if you will like to view the feedback and evaluation summary from the day.

Evaluation Summary

 

Thank you for reading.

If you enjoyed reading this, you may also enjoy some other topics we have discussed in this series.

Photo credit: Pixabay

 

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