Shoddy diagnosis = parents in pain

Isn’t it just so satisfying when all the pieces of a puzzle come together promptly as well as perfectly?

Recently I read about a woman who was severely worried about her grandson. It was only weeks after his birth that his grandmother decided to get him to her doctor. Her GP could see immediately that the little man was having problems with his food and that he was starting to become dehydrated: he knew instantly what he was seeing and suggested that the baby was suffering with Pyloric Stenosis. The grandmother looked worried until the doctor lifted his shirt and showed her the scar he’d had across his stomach almost since his birth. Grandma urged her daughter to take the baby to her own doctor, suggesting to him what she thought the condition was. The baby was taken in immediately, operated on and is doing well now.

Wave-like motion across the abdomen after feeding and before vomiting is typical of PS

This story would be quite common. After all, pyloric stenosis occurs in one in every 250-300 babies, so there are many thousands of medical workers who like myself would quickly recognise the condition.

Besides this, pyloric stenosis is the most common reason for infant surgery (apart from elective and unnecessary circumcisions) and apart from tonsillectomies, the most common surgery on children under 5. Every pediatrician, family doctor and hospital emergency department in the world will have seen many cases. Almost always, many of the symptoms cannot be ignored: over several days (or very sometimes, weeks) pyloric stenosis gets to a life-threatening stage that demands medical treatment.

Even more significantly, every medical textbook includes the easily understood and quite obvious tell-tale signs that everyone could easily recognise: projectile vomiting, the reduction or complete cessation of bowel and bladder movements, loss of weight, condition, and finally alertness, and often visible muscular movements across the abdomen and an olive-sized and -shaped mass that can be felt over the stomach.
Yet most people have never heard of this common malady. Worse still, many doctors don’t consider it until they’ve ruled out other problems. And even worse than that, there are hundreds of complaints on the web from parents who have been upset or angered by the way their distress and their baby’s trouble were brushed off with (usually) patronising talk of “all babies puke” and “over-anxious parents”.

Here is one mother’s story:

When my youngest was born he was really sick all the time and the doctor kept telling me he had reflux, but I just knew there was something more to it, as the Gaviscon and Infacol didn’t do a thing. I had him at the doctor 3 times in 2 weeks and he just said the same thing. The final straw came when he was only 3 weeks old and I was feeding him and he took half an ounce and brought up about 4, so i took him to the hospital and the little soul had pyloric stenosis and needed to have an operation. If I had kept listening to the doctor he could have ended up seriously malnourished, but because I trusted myself he was in and out of hospital in less than a week.
I say, don’t ever doubt yourself: you know best!

A month ago an Australian blogger posted the horrendous process a friend of hers endured before the severity of her baby’s condition was taken seriously. Anna’s full account is worth reading; it is both infuriating and heart-rending.

Let me highlight the main points here:

  • Anna’s friends had two normal healthy children before their son developed what they first assumed was reflux at two months.
  • As the “reflux” became worse, the mother took her son to a doctor who treated him for a cold.
  • A week later her son had clearly lost condition so she decided to see another doctor, who diagnosed bronchiolitis again, as well as mild reflux. The mother protested that her baby was projectile vomiting after every feed, that he had stopped gaining weight, and that a cousin had had pyloric stenosis. The doctor said little but his manner told the mother he thought she was over-reacting.
  • Not satisfied, the woman then took her son to the local hospital, which also told her the problem was reflux.The infant was now losing weight, he’d become more irritable, his bowel movements were black and his urine output had fallen. He was seen by a third doctor who agreed that his condition was of serious concern. But he also diagnosed the problem as reflux and prescribed a week’s medication.Three days later, the mother steeled herself to see the hospital doctor again, who refused her demand to test the baby for pyloric stenosis, nor did he give any medication; he did make an appointment with a paediatrician for two days later.
  • The following morning, the baby was listless and crying in pain. With the husband’s and grandparents’ support, the baby was taken back to the hospital. The infant was admitted and immediately treated for dehydration; an ultrasound showed his pylorus was enlarged and closed.
  • The local hospital could not do the surgery but then the city children’s hospital refused to recognise the diagnosis; the tests were repeated but again rejected. The children’s hospital then agreed to receive the baby, now a 10 week old whose only intake was coming from an IV drip, but he would have to go through the entire admission and testing process again.
  • Finally transferred to the children’s hospital, the couple saw a surgeon at 3 am who immediately agreed with the pyloric stenosis diagnosis and arranged urgent surgery. He was appalled at the way the family has been dealt with, and commented that most infants with pyloric stenosis do not survive for two weeks and that most cases are diagnosed within a week.

In my next post I want to set out and explore some of the good and bad reasons why so many personal stories about pyloric stenosis babies are not happy ones.

[I am grateful to Ly’ren, Maxine and Anna, the people whose stories I have included here; the web addresses of the blogs referred to are available on request.]

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2 thoughts on “Shoddy diagnosis = parents in pain

  1. Anna

    Thank you, Fred, for including my story in this post. I think it is so important to spread awareness about this debilitating condition, so that parents have more power to insist on appropriate medical investigations, if they need to. Information is power.
    I have been reading some of your posts and have become a little more familiar with your story. I admire your bravery and honesty in writing about your post traumatic stress, after your infant surgery. Now that I think about it, it makes perfect sense to me that something so traumatic as infant surgery should leave psychological scars as well as physical ones – surgery is traumatic. Yet this is something else that parents are not warned about when giving consent to having their children operated on, probably because it is not yet recognised as a genuine condition, as you mention in your posts.
    I would like to use my blog to help provide information about Pyloric Stenosis to parents. I will include a link to your blog, if that’s okay?
    Best wishes on your path towards being at peace with your traumatic experience.

    Reply
    1. Fred Vanderbom Post author

      Thanks, Anna, for your continuing interest in this subject, including your Update blog today with links to good information about pyloric stenosis. It is very understandable that parents with a distressingly unwell newborn find it difficult to learn all they can about possible causes and then stand their ground about the diagnosis with a professional! But anything we can do to increase the general awareness of this fairly common condition and the medical world’s mindfulness of aspects other than the narrowly scientific has to be valuable. Thanks for the link to my blogging about this.
      Anná’s second blog is at http://3under3tmn.wordpress.com/2011/05/30/more-about-pyloric-stenosis/

      Reply

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