Mahima Chandrasekhar and Tara George. Mother Ship by Francesca Segal, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.32838
A mother’s experience of the Neonatal Unit
Mother Ship by Francesca Segal chronicles the first 56 days, from birth to discharge, that the author’s twin, 30 week, premature babies spent in the NICU. She describes a journey that is far from smooth sailing; rocky and filled with turbulence from the start. At the same time, it is one filled with hope, longing and joy, which ultimately steers this ship to its destination: home.
Segal describes how she expected her pregnancy to progress, and how divergent from reality it became. At times, her words are soaked in guilt and come through to the reader in waves: “we are encouraged to believe that a mother’s body is mad and clever… though mine was not quite mad and clever enough to sustain a pregnancy.” It is soothed, in part, by her well-timed jabs of humour, expressed through the rose-tinted glasses of nostalgia. She celebrates bonds forged through shared experiences between the mothers of the ‘milking shed’, makes us appreciate the enduring presence of her husband and prioritises hygiene in a way that would make every Infection Control team proud.
Importantly, Segal highlights many areas for improvement in the way care is provided. Her observations of the NICU bring attention to the lightning-fast and disorientating ward rounds, the constant use of medical jargon, frighteningly alien words second only to the name of that town in Wales (you all know where I am speaking about), and reluctance in having to involve yet another ‘Mum’ in decision making. Despite this, she showers gratitude upon the healthcare professionals with whom she shares a complicated but respectful relationship.
The book evokes a cocktail of emotions, prompts you to give your mother a call, and makes you ever so fond of little ‘A-lette’ and ‘B-lette’. Mother or not, clinician or not, a treat for all who read.
Why I am recommending this book
Tara George (GP)
Mother Ship provides a window into a world that may be familiar to many of us in a work context but seen here through the eyes of a mother. Disorientating, frightening, a liminal place where babies born too small, too soon may live or may die. What really struck me was the camaraderie of “the milking shed”, the irreverent humour, the ability ultimately to be human when that was all she had left. It left me expanding the horizons of what the word “mother” really is. There are important lessons for those of us who look after whole families as well as for paediatricians – leaving your newborn (safely?) in the hospital and being at home, a mother with no mothering to do. As a GP with some interest in perinatal mental health, it is clear how much mothers in the scenario need support but it is also made strikingly obvious how little time she has for anything other than sleep, travel, endless expressing of milk and being in the hospital. The moment of absolute compassion and wisdom when the nurses send her and her husband out for dinner one night reaffirms for me how truly amazing NHS staff are at both the high tech bits of medicine and at the human side.
Mahima Chandrasekhar (FY2)
Medical school has always highlighted the merits of clear communication, empathy and a multidisciplinary approach to decision making. We practiced a lot of these skills in simulated environments and attempted to apply our learning into the clinical environment, to varying degrees of success. Reading Mothership has provided me with the perspective of the mother. Apart from being an enjoyable and moving story, it has provided some constructive feedback on our communication as a health profession. This book has given me several points to reflect on:
‘Mum’ has a name!
It is often hard to remember all the names of all the children and parents. However, making that effort to ask for her name in the ward round will improve the quality of your rapport. It will also make the mother of your patient feel more like she is part of the team making decisions about the child: which she is.
The mother of your patient might be a patient too
Sometimes, the child is born via emergency C-Section, and the mother standing opposite you, less than a day after the operation, is on a cocktail of drugs to allow her to achieve basic functionality through the haze of pain. The information you are giving may not be absorbed in the way you intend, and something as small as offering her a chair to sit on, can make the world of a difference.
Avoid jargon
I often have to Google certain terms and abbreviations, especially when moving on to a new job. If it is confusing for a medical junior, I can imagine it being downright disorientating for a non-medical parent. Explaining the plan and developments in detail without jargon can help avoid unnecessary anxiety and misunderstandings.
Involve parents in the decision making
Inevitably, parents will need to care for their children when discharged from hospital. Ensuring they are aware of the ongoing medical issues, red flags, NG tube training, basic life support, emergency numbers to call, is paramount for a safe discharge. Involve parents early, to avoid information dump at the end.
Being at the start of my medical career, everything is a learning point, and I could go on. You will make your own reflections, both personal and professional, when you pick up this book.
Mother Ship is an enjoyable learning experience on communication. A case-based discussion that is riveting and heart-warming, right in the comfort of your own home, with a warm cup of tea in hand and a rich environment for reflection.
If you want to go deeper then please watch this heartfelt talk from neonatologist, Jasmine Antoine, about being the parent, not the practitioner in NICU.
Defining Learning Disability
Liz Herrieven. Defining Learning Disability, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.33287
In all areas of paediatric practice (and beyond), we come into contact with children with a learning disability, learning difficulties or autism. Terminology is important, not only for making sure we understand a child’s diagnosis properly, but also for providing the best possible care. Getting it right can also help gain the trust of parents and carers who will often know far more about appropriate language use than we clinicians. This guide aims to describe the key points to remember – some of them easier to grasp than others.
Learning Disability
Let’s start with learning disability or LD. 2.5% of the children in the UK have a learning disability, yet it’s one of the most commonly confused terms. Probably the most pragmatic and descriptive definition is that used by Mencap, a UK charity supporting people with LD: “A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.” The World Health Organisation keeps it short, although open to discussion and interpretation. For them it’s “a state of arrested or incomplete development of mind.”
Having a learning disability means an individual will not only find learning difficult but also face challenges with retaining, processing, reasoning and deducing information. Some people will find different areas of learning more challenging than others. Children with Down syndrome have a relative strength in visual learning and find learning or remembering auditory information more difficult. Building on strengths can help to balance out some of the more challenging areas. Some people with LD may be able to communicate very well, even if they struggle to understand all of what is communicated to them but many will have an associated speech and language problem.
The term intellectual disability, or ID, is used rather than LD, to signify that the condition affects intellect and is lifelong. This fact is important – the individual will need support, depending on their level of disability, for the whole of their life. There are many causes of LD, all involve the developing brain – genetic or chromosomal conditions, intrauterine infections, perinatal hypoxic brain injury to name but a few. After the brain has developed, such an insult is described as an acquired brain injury.
The level of disability may be mild, moderate or severe, depending on IQ, although this is rarely formally calculated and actually doesn’t really add much. Support and care should be tailored to an individual’s needs rather than their IQ.
The term PMLD is used to describe individuals with Profound and Multiple Learning Disability. These patients may have fairly complex comorbidities alongside severe learning disabilities. They can affect not only their ability to learn and process information, but also their ability to communicate and to be independent.
Learning Difficulty
A learning difficulty is very different to a learning disability, and is far more common. Things like ADHD, dyspraxia or dyslexia are all examples of a learning difficulty. They all make learning more difficult, but don’t affect overall intellect or IQ.
Autism
Autism, or an autistic spectrum condition (ASC), is not itself a learning disability, although about one-third of people with ASC will also have LD. The National Autistic Society (UK) describes autism as “a lifelong developmental disability which affects how people communicate and interact with the world”. There are lots of different elements, each of which may be present to a greater or lesser extent within one individual, so each autistic person is different from the next. The autistic spectrum is not a linear thing, with someone being more or less autistic. “High functioning” or “low functioning” are not particularly appropriate terms either. It’s more helpful to think about how someone’s autistic features affect them. The most common features include social communication difficulties, sensory processing disorder and restrictive or repetitive movements.
Social communication difficulties include challenges in interpreting body language or facial expression, and reading hidden meaning into words or phrases, particularly when metaphors are used. Sensory processing difficulties involve the body misinterpreting sensations. A light touch may be perceived as very painful whilst a deeper touch may be more comforting. Bright lights or certain noises could be very distressing. Restrictive or repetitive movements are often comforting, or theymay distract from upsetting or uncomfortable situations.
ASC was more commonly known as ASD, or autistic spectrum disorder. The move to calling it a condition, instead, is an attempt to remove unnecessary negativity. ASC encompasses many other conditions such as that previously known as Asperger syndrome. This name is no longer preferred – Hans Asperger has a troubling history. It was used to describe people with normal or even high intelligence, coupled with autistic features. Other conditions included under the ASC umbrella include PDD (pervasive developmental disorder) and PDA (pathological demand avoidance).
Person First vs Identity First Language
We use person-first language for many conditions. Someone with asthma is not defined by their asthma but has a whole identity of their own, so they are described as someone with asthma. Someone with Down syndrome may share certain physical features with someone else with Down syndrome, but they have their own identity and character which is very different from that of others with Down syndrome, so they are described as a person with Down syndrome, not a Down’s person or, even worse, a Downs.
Many autistic people feel that their autistic features form part of their identity – that they would be a very different person if they did not have autism, so they describe themselves as autistic, rather than a person with autism. You can read more about person first vs identity first language here.
And if you can’t remember what to say when?
Ask! It’s always better to ask someone how they would prefer to be described than to guess. All people. whether they have LD, a learning difficulty or ASC are individuals and will have their own preferences, likes and dislikes. Getting the language right can be a great start, but being honest and open when you’re not sure is a very close second.