An open letter to other medical professionals from a doctor NICU Mum

My name is Eilidh and I'm a first time mum to Ruairidh, who is now 17 months old. I am a doctor who is currently on medical leave for PTSD related to my son's birth. 

I have shared below a rant that I wrote on my Facebook in July after attending a radiology appointment for Ruairidh. My rant was long, and it was primarily aimed at my colleagues, but I think it is also useful to give other medical parents of NICU babies an idea of what they don't need to just tolerate and how they can avoid some of the extra trauma.

I got hundreds of responses when this was shared on Facebook, mostly from doctors. Many were very genuine in admitting they had honestly never considered how much the language and questions they ask can traumatise their patients. A few were very defensive about how I just need to do this or that differently, or sometimes they need to traumatise parents for medical reasons etc. But most were very positive! 

I hope sharing my rant here will help bridge the gap in communication between some more patients, parents and staff.

"I wanted to share the distressing experience I had taking Ruairidh for an ultrasound today, as sadly this is pretty much always my experience when I take him to appointments. I'm hoping if I share this that maybe some of my doctor, nurse and other health care friends will be able to apply it to their own communication with patients and their families. Just a warning that what I'm going to write will be upsetting, particularly to anyone who has dealt with birth trauma or a very unwell child. It's also very long, because I'm pissed off and  I have a lot to say!

Today I took Ruairidh for an ultrasound and once again I spent the whole appointment holding back tears. 

I have been through hell with what has happened with Ruairidh and am now on long term sick leave due to the PTSD this has caused me. I had an incredibly traumatic birth, which was made so much worse by the horrific care we received, which has sadly lacked kindness and empathy. If you made a list of what should be done to prevent PTSD after a traumatic birth, it was like everyone was desperate to do the complete opposite for us. I was left to believe Ruairidh was dead for a prolonged period of time after he was born.

I have on multiple occasions been told that he may die and to expect the worst. I have watched him being resuscitated several times. Watched him lie there grey and lifeless, while a crowd of people do chest compressions, bag him, intubate him and desperately try to save his life. I have watched him be stabbed over and over again, while consultant after consultant desperately searches for a vein as they are all so damaged now and he needs urgent medication to save his life. I've had him taken away to theatre, both planned and as an emergency, not sure when or if I would ever see him again. I have gone days and weeks not allowed to touch Ruairidh, to pick him up or to hold him. He was two months old before I was ever allowed to spend the night in the same room as him, eat in the same room as him or be alone with him.

This is just the tip of the iceberg of traumatic experiences we have endured due to Ruairidh's health. I share the above so people can understand that Ruairidh's birth and medical history is incredibly traumatic for me, and not something I generally want to relive as casual conversation with strangers. And yet every interaction I have with a medical professional involves them asking me question after question about this. Very rarely is this necessary.

As a doctor myself, I understand when this information is necessary, and in the event Ruairidh is being admitted to hospital by a doctor who cannot read, and is therefore unable to use his notes, I will happily explain in detail his history. Otherwise when people are asking just as a topic of conversation, or because they are interested, it is unnecessary and cruel.

I have been a medical student, I understand that Ruairidh is very interesting. I understand that he has several rare medical conditions, as well as unusually severe presentations of more common ones. I understand that he has some very interesting and unusual examination findings and signs, and how interesting this is to people. I'm sure as both a student and a doctor I have been insensitive to patients and their families regarding how interesting I find their conditions, and I regret any hurt I have caused others. Because it does hurt. When every appointment we go to, every procedure, people ask question after question about his history, forcing me to relive the worst moments of my life. Usually they don't actually know much about his conditions, as it's pretty specialised even for medical professionals. So after they ask me questions, making me recap his birth, his months long medical stays and his diagnoses, I usually have to then explain these diagnoses to them and what they mean. They want to know what this means for Ruairidh and usually ask me deeply upsetting questions about his future.

This is not fun, casual conversation for me. It is upsetting, traumatic torture. And yet it is what happens without fail at every appointment.

I have had someone stop mid way through an unrelated appointment for me that was nothing to do with Ruairidh, to ask, excitedly, if they can feel Ruairidh's head because they have never seen craniosynostosis before. Every scan involves me being asked question after question about what's wrong with Ruairidh, why he's been in hospital and what it all means. This morning the radiographer felt the need to ask me a bunch of unnecccesary questions about Ruairidh, about his history and development. He was having a renal USS, so none of this was relevant and I definitely wasn't after an opinion on his development! 

It's exhausting and soul destroying. Every hospital admission seems to involve students coming all day to see us, because they are so fascinated by Ruairidh's history and want to ask me questions about it, because they've been told I'm a doctor and will therefore be able to answer their questions well and show them what they're looking for. They all want to feel his head. We usually have lines of medical, nursing and physiotherapy students wanting to come and see him, to listen to his chest, because they're so excited to hear stridor for the first time and see his work of breathing. I get this. I do. I'm sure I've been that student. But it's so upsetting to have to go through it, over and over again and to have Ruairidh treated like an exhibit in a zoo or museum. We have been to clinics which have twenty people sitting in them, as so many people are interested in Ruairidh and want to listen in. In these clinics I usually get asked a bunch of extra questions which traumatise me, just to satisfy the interest of all the people sitting in. I've sat there holding Ruairidh while a queue of doctors and students excitedly waits to examine his head, never stopping to ask if it's OK. I've stood in the hospital beside him when he's a newborn as the team competes to be the most observant, by describing everything about his appearance they could possibly even slightly construe as being a sign, as if they're describing some kind of deformed goblin they found in a cave, rather than my son who I hadn't yet been allowed to hold. Almost all newborns look like wee old men, think how you'd feel if someone stood and described every detail of your newborn child in the cruelest way possible, trying to classify every aspect of their appearance as a deformity. It's unnecessary and cruel.

These questions and conversations invariably are accompanied by pity. Sometimes we're lucky and someone manages kindness, empathy and compassion, but upsettingly most people only manage pity. They pity Ruairidh, they pity me for what I've been through and they pity us for having Ruairidh. Which is devastating. Nobody wants to be pitied. Nobody. And nobody wants their child to be pitied and they definitely don't want to be pitied for having their child. I love Ruairidh. He's an absolute legend. He loves everyday of his life. So please don't pity him or us. You are welcome to feel compassion or empathy for us, for what we've been through, both the trauma me and Malcolm have suffered and for what Ruairidh has been through. But we don't want or need pity. 

I also almost always get asked two questions which are so hurtful and upsetting that I really hope this reaches some people, who listen and never ask people them again. I get asked "Is he your first?" which is then immediately followed by "What a shame for you that your first is like this!". Now, I get this is probably meant kindly, but the way it comes across everytime is that I am being pitied for not even being able to have one child "correctly". It is a comment which really hurts me - nobody wants to be pitied and nobody wants to hear that other people think their child is "less than" . The second question is "Did you not know he'd be like this from the scans?". Clearly the implication from this question is they are asking why I did not terminate Ruairidh. Firstly most of Ruairidh's conditions would not be able to be seen on a scan, or are things caused later on. Anything which could have been seen on a scan was unfortunately not. But the implication that his health problems means he should have been terminated, or that the level of compassion we receive is based on how to "blame" I am is incredibly upsetting. If I had been aware of what we would have to go through, of course I wouldn't have terminated Ruairidh - he's awesome!

This has been very long, so thank you for listening to my whinging if you've managed to get through it all.

The point I'm trying to get across, is to remember that patients and their families are people. Their medical histories are real, and they are things that actually happened to them.

I'm certain that very few of the people who have caused me so much distress have ever meant to do so, and would probably be heartbroken to know they have caused so much upset, which is why I have shared this, as I think as medical professionals we are sometimes unaware of the negative effect we have on patients and their families.

In the event that you genuinely need to know the details of someone's medical history, please ask sensitively. And if you don't need to know, but are just asking to make conversation or because you are interested, or because you're a student and want to be as "thorough" as possible, maybe think again. If you are doing something and need to chat to a patient or their family, ask them about something else. Make boring small talk. Don't ask them to relive the worst moments of their life. And if you want to know more, go and read their notes (with permission!).

Also think about how many people you need in a clinic. If you have twenty people in a clinic, even for someone who hasn't been traumatised and isn't your colleague, this is horribly intimidating, upsetting and almost always unnecessary.

And please don't pity people - it's unkind and cruel."

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