Parents of babies operated on for pyloric stenosis have posted far too many stories of their frustration and anger.
Why is this so?
And what would these parents ask of general practice doctors and pediatric specialists?
After years of following this subject, the answers to each question are quite clear. And, hey, all we need is for the medical world to read and take to heart these answers – and for the parents of sick babies to realise a few facts about the medical world.
What do some doctors need to remember?
First and foremost, we need to realise that as there are so many hundreds of distressed parents who go to the length of reporting on their bad experience on the internet, there will be many thousands whose unsatisfactory experiences are kept among family and friends.
It is just as important to realise that most parents found their doctor and hospital very caring and supportive during what many have described as the most traumatic time of their lives.
So, what is upsetting so many parents dealing with the surgery of their newborn (or recently-born) child?
In one word: the doctor’s attitude. Far too many doctors in both private practice and hospital emergency departments are described again and again as patronising, paternalistic, condescending, superior, demeaning, and belittling of parents and their account of what moved them to seek help for their desperately sick infant.
In my previous blog I retold several such stories.
Doctors would know that many parents would not seek help until they are deeply concerned by their baby’s illness and losing weight and condition. And that before they see their doctor they have consulted the web and spoken with other parents. Many of them have the experience and confidence gained from having older children. Most are sensible, educated, well-informed and well-aware of what is normal with babies. Many are not given to panic and running to a doctor, certainly not repeatedly so. Some have had a previous experience with pyloric stenosis: an older child’s, another family member’s, or their own history. Some have said they trusted their inner feeling, usually their “maternal instinct” which they found mysterious but had rarely been proved unfounded.
What do new parents-in-crisis need to realise when they take a sick baby to the doctor?
1 Doctors work under great pressure.
- Each consultation has to be time-limited.
- The government and/or insurers demand that medical, investigation and hospital costs be strictly controlled.
- Doctors must maintain careful records to justify their diagnosis and treatment, to obtain and maintain public and/or private funding, and to protect them in the event of litigation.
- A doctor’s good reputation depends on a reasonable measure of success in diagnosis and treatment.
2 Doctors like all of us have strengths and weaknesses.
Strong diagnostic and relational (people) skills are absolutely foundational if the very justifiable complaints I have mentioned are to be greatly reduced. But life has taught me that these two competences are far from universal, and that vocational training is limited in what it can do to remedy this.
A specialist who helped me some years ago has a reputation for the excellent surgical success from which I benefitted, but his personal manner only rarely showed his humanity, and he left me feeling somewhat steamrollered when I once raised a particular concern with him. I am mature-aged and had just come through a stressful period of treatment with flying colours. I would not regard this doctor as suitable for pediatric work which involves vulnerable young adults stressed over a newborn or young child.
3 Diagnosis of pyloric stenosis and many other maladies can be complex.
It can also be obvious: I became a food fountain only 10 days after I was born, and a baby who manages to send a load of mother’s milk one or more metres across a doctor’s consulting room is bound to be taken seriously by a medico. In my previous blog I listed this and several other clear pointers to pyloric stenosis, which is by far the most common deadly abdominal condition affecting infants and usually remedied by surgery.
But (to stay with pyloric stenosis, with which I am familiar), recognising a condition with enough confidence to proceed to costly testing may need time. Pyloric stenosis typically starts with occasional small regurgitations of milk and it may take a week or longer to become full-blown. Sometimes the tell-tale “pyloric olive” (the swollen muscle) cannot be found for any of several reasons. A baby can vomit soon or considerable time after a feed, which usually deprives the doctor of a first-hand demonstration. There are several other scary and life-threatening conditions affecting a baby’s alimentary canal, each of which has somewhat similar and different symptoms and would require different diagnostic examinations.
It needs to be remembered that doctors see many parents with a baby whose condition may sound or look serious, but is in fact rather benign. After all, “all babies bring up food”, a significant number suffer gastric reflux that needs medication, and some parents are overly anxious or given to exaggeration.
4 Medical training is still too much entangled with “the scientific method”.
This is slowly changing as medical courses and workers increasingly value the human, inter-personal, and social dimensions of their work, and take in more students with recognisable interest, sensitivity and skills in these areas.
The traditional training of especially doctors has emphasised a dispassionate and purely evidence-based approach to their work, and as a 65 year old I observe that “we teach out of how we were taught”. It is hard to escape the instruction and modelling of those who taught and trained us. When we work hard over long hours and often with stressed people, it must be hard to set aside the advice and example of those who created a distance between themselves and their patients.
In my own field of work (the church and Christian doctrine) I have observed that many of my co-practitioners have used their belief system to achieve the same, I suspect all-too-often without their realising this.
Next time: my prescription for pained parents and patronising practitioners.