Pyloric stenosis: a mother’s story

In mid-2013 an Australian mother posted a story and some photos of her son for his 8th birthday – with his permission.  She wrote –

I am more than happy for you to use his photo and story to help raise awareness of infant pyloric stenosis (“PS”) in any way you feel will help.  …  I hope it can help others.

What this mother writes is typical of the experience of countless numbers of parents, something this blogsite has often raised and must surely challenge all providers of medical care.  Here is this mother’s story, edited slightly to form one account from her correspondence with me…

SL 2005-13My little fighter: this is my son exactly 8 years since he got out of hospital from his operation.  He was 5 weeks old when he had it done.

Getting a diagnosis

We had had two weeks of hell: my son actually stopped breathing because he was throwing up so much.  I was lucky I reacted quickly when he stopped breathing, perhaps others don’t.  Mind you, the clean up afterwards was awful, he had power chucked across the lounge room, covering everything.  He doesn’t do things by halves, that’s for sure.  That was his worst: most vomits were just 1-2 meters, still awful to deal with.  But once he was breathing we were in the car and on the way to hospital.

We live in a small industrial city of about 22,000 in Australia, and I had taken him to 4 – 5 doctors and to the hospital at home 3 times for his vomiting, and I got told the usual stuff: reflux, etc, even that I was an over-anxious young mum (I was 22, most people here are parents by the time they are 18-19) – and this was after he’d stopped breathing on me.  Unfortunately it seems most doctors either don’t know about PS or don’t want to even suggest it as a possibility.

So we made a call to the hospital in the next town over (45 minutes away) and a night nurse basically diagnosed him over the phone.  It was a huge relief to have a nurse not far away tell us what it probably was.

So it had time to sit and settle in why I was out: I had taken him to 3 private doctors and the hospital 3 times before I called an out-of-town hospital.  I couldn’t believe that so many professionals didn’t know or wouldn’t say anything except that he had reflux.

Three days later he had his operation.

At the hospital

His op was done in 2005 at the children’s hospital of one of Australia’s capital cities, and they were amazing: the nurses were so good and knowing we had little support locally they went out of their way to be even more helpful..  We had the choice of the long slice under his ribs or the key holes: thankfully the surgeon agreed key hole was better.

When we were in the children’s hospital I saw a poster made about PS by one of the nurses or a med student.  I was shocked at the number of cases: 1/200 children are born with it, yet with it being seemingly so common, it was so hard to get it diagnosed.  It affects first born males more than other babies, and yes, it can be fatal.

Since his op

SL 2005-13bThis is what is left of the scars my little man has from his operation when he was 5 weeks old.  Now he’s nearly 9 years old.  He knows he’s lucky to have tiny, tiny scars, and being able to show him what scars others have from the same operation is very helpful.

My son chose these photos himself and is more than happy to let others know what happened.  so other mummies don’t have to be scared like I was.  He is doing really well.  It took a long time for him to put on weight, and even now he’s still very skinny, but he’s hit all his growth markers on time or earlier.  Just glad someone knew what was happening with him.

SL 2005-13aYes, it is so scary.  I had never heard of PS before he was diagnosed, yet after that I found out friends had had it when they were babies.

Time seems to fly once they are over it.  My son has 3 tiny tiny scars, not even 3 mm long: no stitches were required.  One scar is near his bellybutton, the other two are on the right side of his tummy, one up towards his ribs, and one in line with his bellybutton.  If you don’t know they are there you can’t see them.  He’s very lucky in that respect.

If I hadn’t pointed out his scars he wouldn’t know they were there, but I’ve always let him know what happened and how it was handled by the surgeon.  His little brother is upset because he doesn’t have scars too.  It’s quite cute as he knows he’s identical to his big brother in every other way.

My little one now has enough scars of his own, so he’s not too bad now, just cute when he got upset because his big brother had been sick and in hospital and he wasn’t here to look after him and make him feel better.  Not bad since there is a 4 year age gap.

My boys are my world, I know they will learn things on their own, I just need to guide them in the right directions.

Mother’s reflections

I was surprised to find out how common PS is, yet not one of the 3 doctors or dozen nurses we saw mentioned it.

Where I’m from we have lots of young mums, and I would hate to think how many of them get told the same as me, that I was just an over-anxious young mum; I was 22, but what about the younger teenagers who get told it and believe it, not getting their baby the help it needs?  We get given tons of leaflets telling us how to breast feed or which baby product is better, even why we should immunise, but nothing on pyloric stenosis.

Our run was far from easy, I had to fight doctors, nurses and midwives to finally get an answer.  My son has had it easy since his operation, so we are lucky in that aspect.

After what my son went through, a friend of a friend’s son had the same symptoms and she went with her friend to the doctor’s and talked about pyloric stenosis, so he was sent for an ultrasound; otherwise his mum would have been like me, worrying and not knowing.

My son thinks it’s cool that his scars are on the internet.  I checked with him before I put them up.  I explained to him that once the photos are up everyone can see them, and all the dangers of the internet.  (The little bugger hacked my wifi to download games, so he got the danger talk.)

But he likes that he can show his scars and see what other people’s are like.

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2 thoughts on “Pyloric stenosis: a mother’s story

  1. Wendy

    Thank you for sharing this story. I hope a lot of people read it and are educated by it. It’s so important that pyloric stenosis is widely understood. My mother went through what this mother went through. What a horrible experience. I was down to four pounds before I got help because the obstetrician blamed my mother for misfeeding me. Whoever reads this account, please pass on the word about this often deadly condition. Deadly these days because it’s caught too late!

    Reply
  2. Fred Vanderbom Post author

    Thank you Wendy for your comments. Although not literally deadly, the effect of being treated and fobbed off as this mother was is not to be overlooked or dismissed. It seems from my correspondence that this mother and her son are doing well, but she has certainly been affected by her experience of her local medical community’s incompetence at a time of life-threatening need.

    Reply

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