Pyloric stenosis: long-term complications

Parents with a pyloric stenosis (“PS”) baby are always reassured by their paediatrician and surgeon, as they should be.  Although PS is usually a fatal condition, it can be brought under control with a small surgical procedure that is very safe, and although this operation sometimes leaves the baby with one or two immediate but treatable problems like reflux, there are no long-term effects.

Reassurances like this are the norm – but are they telling enough of the story?

“If only we had known…”

In fact, the “silent majority” of those who have had surgery for PS seem to have no or only minor complaints (usually a sensitive tummy).  However, PS and its operation are relatively common, between 1 and 5 in every 1,000 infants in most of the countries where this blog is read.  And so online there are countless complaints about significant challenges for babies, children and adults after this operation.

The “Categories” search box to the right of this page gives access to some of the data and stories I have found.

Here are two personal stories about how PS affected adult survivors.

Both are from women who shared their experience in 2013 on Real Self, a U.S. website that promotes cosmetic or reconstructive surgery after weight loss, malformation, accident or surgery.

The first story is from a woman who writes about two things with which she struggled: deep loathing and self-consciousness  about her scar, a common issue especially for many who had PS surgery before minimal access techniques became available after about 1990.

Hernias  were this woman’s second nightmare, most likely caused by the violent vomiting of PS, the surgery, a constitutionally weak abdominal wall, or all of these.

The good news is that after 60 years and many surgical repairs she is now very happy.  She posted her story on 1 April 2013 under the nom-de-plume Adreamcometrue.

Surgical scar after herniation or rupture (but not the writer's)

Surgical scar after herniation or rupture (but not the writer’s)

My tummy problems began when I was 22 days old, in 1950.  No that is not a misprint.  I was born two months premature.  At 20 days I began projectile vomiting.  After a couple of days a diagnosis was made: pyloric stenosis.  Surgery was performed.  That surgery left my midsection a mess.  As a child and teen I was cursed with a huge vertical scar surrounded by bulging flesh.  Nothing like being a teen and wearing a long line bra.  Body issues were definitely present.

My first reconstructive surgery to repair multiple hernias was in 1970.  There were other hernia surgeries in 1982, 2000, 2005, and 2007.  After the surgery in 2007 I was left with a huge bulge on the upper left quadrant of my ab region.  Three different docs told me I did not have another hernia.  Finally, as I was shopping for a gown for my daughter’s up-coming wedding,  I was becoming more and more discouraged.  Dresses in my usual size were not fitting.

In frustration, I went to Dr. Barach (a plastic surgeon).  He made an appointment with a[nother] surgeon.  They both felt I had another hernia.  So on March 22 the surgeon took care of a hernia and a wall tear next to it and Dr. B took care of the tummy tuck.  I am so thrilled.  The first time I saw my middle, 5 days post op, I cried.  I never thought my middle could look this way… I look great with my drains and swelling.

Based on the stories shared by others here, I can only imagine what I will look like 6 months from now.  I have been seen by my plastic surgeon two times since returning home and have another appointment this afternoon.  Keeping my fingers crossed that the drains will be removed.  Thank you to everyone who reports here.

This website has been very useful and comforting.  I am looking forward to returning to the gym and am continuing to eat healthy…. well… Easter doesn’t count… Does it?  Have a great day!

P.S… Insurance covered the hernia portion of surgery but not the plastic surgeon’s bill.  The use of the Operating Room was also pro-rated, and we had to pay $875 for that.

Some days later she continued –

I am now 13 days post-op.  On day 10 my drains were removed…

I hadn’t taken my own “before” pics.  I asked for a set, which they gave me.  Now I have to figure out how to scan them onto my computer so I can post them.  What a difference!  My pre-op size 6 jeans fit with no muffin top.  Yay!..

The plastic surgeon reminded me that my walking should not resemble exercise, when I complained that it took 15 minutes to walk about ¼ mile.  The plastic surgeon said I shouldn’t even consider using a treadmill for a 6 weeks.  I was in the gym 5 days a week prior to surgery.  Due to issues that make me easily develop hernias and tears, I can’t do CORE exercises.

 *          *          *

The second story is a powerful reminder of the real risk of complications long after PS surgery and also during and after any subsequent surgery.  These problems are often unexpected and possibly disastrous.  This woman prepared for cosmetic surgery full of both anticipation and fear.  She first posted on 1 Jan 2013 as “1hotway” and I have felt it helpful to add some comments.

First of all, I just want to thank all of you beautiful ladies for sharing your amazing stories.  This site has been a true godsend to me.  I am 38 years old with 3 beautiful boys … All of the damage to my tummy was done with my first born.  I was 20, so I never really got to enjoy my body.  I got terrible stretch marks, and needless to say a two piece was never worn again.  I have been at a pretty average weight my whole life. …

The writer's damage after carrying children and two surgeries

The writer’s damage after carrying children and two surgeries

When I was a baby I had a little stomach issue called Pyloric Stenosis.  It left about a 3″ scar on the upper right side of my abdomen.  I also had my gallbladder removed at the age of 21. [This quite often happens after the PS operation but the risk is it seems never mentioned. Ed.]  They unfortunately had to do the open surgery that left about a 7″ scar on my upper right abdomen.  Ugh!  Right?  I look like a road map!

I am sooooo ready for this. Thank goodness I have a wonderful hubby who loves me just the way I am.  One of the four plastic surgeons I saw for a consult said he didn’t think I was a good candidate for the TT [tummy tuck].  The other three said it would be fine.  Of course this makes me very nervous.  I don’t want to settle or compromise for my results.  It’s all or nothing…

A few days later she wrote –

I love looking at all of these amazing stories, but some of them aren’t so wonderful.  I guess it is good to read the good and the bad, but frankly it scares the heck out of me.  Necrosis???  [The death of tissue cut off from the blood supply by the old scar(s) and then plastic surgery. Ed.]  That is really scary stuff.  I have just read some terrifying reviews on that.  I can only PRAY that doesn’t happen to me.  One of the plastic surgeons I saw said that I am at a higher risk for this because of myprevious abdominal surgeries.  My plastic surgeon that is doing my TT isn’t concerned at all.  He is confident there shouldn’t be a problem since my surgeries were so long ago.  I am getting really nervous and excited.

2 February 2013

Paid in full. Got recliner. Pre-Op in a week. This girl is ready and nervous.

11 February 2013

Had my pre-op today.  BP was a little high.  Probably from reading & signing all of the consent forms.  Not exactly thrilled about reading all of the worst case scenarios.  Trying not to think about all the bad stuff that could happen is easier said than done right?  Any ways, got my prescriptions and doctor took my before pics.  I’m all set now.  Just have to wait for the big day…

18 Feb 2013

Well, I can’t believe it’s finally almost my turn.  I think I have everything all dialed in.  My husband is amazing.  He keeps telling me to just relax and breathe, he will take good care of me…  I wish I could just do that…

2 March 2013 – 6 days post-op

Started getting a strange pain in my right shoulder blade.  By day 7 it was traveling down the right side of my back.  It hurt to take a deep breath in.  I saw my plastic surgeon.  Had a drain removed and told him about the pain I was experiencing.  He assured me it was nothing.  4 hours later I drove myself to the ER because the pain was getting worse.  They ran labs, X-ray, and CT scan.  They confirmed Ihad a pulmonary embolism and admitted me to the hospital right away.  I now have been getting shots in my tummy to break up the clot.  I also have to be put on Coumadin for six months.  This has been the scariest thing in the world to me.  I should have never put myself at this kind of risk with 3 kids and a husband who need me.  I’m very lucky it was caught so early.  Many others aren’t so fortunate…

I’ve noticed that the risk is much greater than I thought.  This has been my biggest fear in getting this surgery.  I felt confident with all of the precautions that were taken during and after the surgery but clearly it wasn’t enough.  I tried to be mobile, I had a shot of heparin right before the surgery, they used the leg squeezers on me too.  Obviously it was just out of my control.  I will never have an elective surgery again.  The risk is just way to great…

4 April 2013

…I still won’t ever say it was worth it, considering all I have been through.  Just so happy to be alive and here with my amazing husband and beautiful boys.

12 Feb 2014

Hello, it has been almost a year since my TT.  I’m going to be honest. I probably wouldn’t go with Dr. H… if I could do it over again.  I think he is a little arrogant and I would definitely go with a doctor who takes every precaution they can.  I know that Pulmonary Embolisms are rare, but most people don’t live through them, so I would go with the safest route.  There really is no way of knowing if the clot came from my pelvis or one of my legs.  I tried to be mobile as often as I could, so just not sure.  I also have to say that I wasn’t impressed with how long it would take for the staff to respond to my messages…

*          *          *

Ugly scarring, herniation, adhesions blocking the gall-bladder, necrosis and other problems related to the scar, fear of the list of hazards we have to acknowledge before submitting to surgery, complications from the surgery…

The stories of just these two women (and the previous posts in this series) make me think I’ll keep encouraging those who can to try, even press for the medical treatment option for their PS baby before they sign a consent to surgery.

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2 thoughts on “Pyloric stenosis: long-term complications

  1. Wendy

    Harrowing story about the embolism. Great that you share it to educate and help people make the right decisions for themselves. Interesting that one woman had such a great experience and the other almost lost her life. Each person’s experience is so different. Each person’s life a complete entity unto itself. Reading these stories though does help inform us and understand the risks. We can take from them what helps each of us in a uniquely. Keep the stories coming!

    Reply
    1. Fred Vanderbom Post author

      Thank you for the encouragement, Wendy. Yes, the stories are many and varied, and it’s important to celebrate the good experiences as well as informing and reminding people of the risks of signing for infant pyloric stenosis surgery that in many cases can be avoided. How we wish that we’d known what we now know about PS, and that we’d had a say in the treatment of our condition on that basis! We can only wish!

      Reply

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