Grateful for life

Having written over 40 posts for this blogsite about the hazards of infant surgery for both the parents and the baby, it’s time to lighten up and quote some of the great infant surgery survivors who help keep me smiling and grateful.

One woman on one of Facebook’s pyloric stenosis Groups wrote about her dear sister: she even got her OK for a photo and wrote –
Living proof your pyloric stenosis child will grow up strong and healthy.  The scar, the bouts of reflux: it really doesn’t stop them doing anything… even belly dancing.  It’s scary for you parents just going through it, but remember your child will not remember any of it! xx  Thank you Sandra for letting me post the picture.

Someone else also mentioned the effect on her as a parent –
My DS [dear son] had surgery for Pyloric Stenosis when he was 5 weeks old and we were in the hospital for 3 days.  Honestly, I think it was easier on him than it was on me, LOL!  I wasn’t so worried about the procedure, but the anesthesia scared me to death considering he was so small (normal baby size, but young).  Of course he did fine and the problem was solved immediately.
Try not to worry and know that the doctors are professionals and do it all the time.  I know… easier said than done.
 Hang in there and good luck!
On a funny note, when they let us in the recovery room, DH, my father, and I were all standing around DS’s little bed.  Most of the other patients in there were adults, all waking up.  Well, DS had the monitor thing on his finger and it fell off, which I didn’t realize.  All of a sudden he got a flat line on the screen, and I of course flipped out.  I can only imagine what the people who were half out of it thought.

From a relieved parent –
My son had Pyloric Stenosis also.  He was 7 weeks at the time.  A 20 minute procedure put an end to two weeks of pure hell for us.  He was fine two hours later and eating without projectile vomiting 3 hours post-op.

This forum Comment is from a Survivor who shared in her parents’ gratitude for the work of the local Ronald McDonald house –
Twenty-six years ago a little girl came into this world much, much too early.  She weighed 3 lbs 14 oz, and required emergency surgery to correct pyloric stenosis, a deadly malformity of the intestines.  Her mom, dad, and grandparents spent over a month in the local Ronald McDonald house while this little girl recovered in the NICU.  Finally, 6 weeks after her birth, this baby left the hospital dressed in cabbage patch doll clothing, because nothing else fit.  If not for the generosity of the Ronald McDonald house, my parents and grandparents would have had a MUCH harder time coping during those critical first weeks of my life. Yes, the little girl was me.

This Comment was in response to something I wrote –
I think my dad had that surgery, and somewhere in the same time frame as you Fred, but not quite 10 years earlier.  He has a similar scar, all I know is that he was an infant and his dad was himself a doctor, so I don’t doubt that he made sure that his baby boy got the best care possible.

And she got this telling yet grateful comment in further response –
I know it made a huge impression on my mother-in-law, she describes seeing him tied down and his arms tied out, then going in the ice and turning blue.  But the only effects on him were positive – he could eat!
It’s amazing to really get an impression of how far we’ve come just in people’s lifetimes.
Interesting that there’s still no known reason, it has a tendency to run in families (hubby’s uncle had it too) and is more common in boys.

From a survivor thankful for medical progress –
I was born with a congenital defect in my stomach (called pyloric stenosis) that would probably have killed me as an infant.  A simple bit of surgery allowed me to survive and I haven’t had a single problem since (the only sign of it is a small scar on my belly that I’ve had all my life).  That may mean that my survival allows me to pass that gene onto offspring … but I’m glad that wasn’t part of the decision. J

And a parent –
Hi – our son had an operation 2 weeks ago (for pyloric stenosis also) and it was really scary at the time.  I kept looking at the paediatric surgeon’s hands, which were absolutely enormous, and thinking there was no way he could possibly put them inside my tiny baby!  But when the dressing came off I couldn’t believe the tiny, neat scar he was left with – they truly do some amazing things.  Our surgeon and anaesthetist were both really lovely and reassuring (and more importantly seemed extremely comfortable and confident in what they were doing) which made all the difference.

From a mother –
During Harry’s recovery I kept comparing how he must feel with the way I felt after my c-section, but he didn’t seem to be in any pain or discomfort at all after the first day.  As another parent said, kids really are amazing.  Through it all I have no doubt Harry coped far better than we did!

And another parent –
My first born son had it 13 years ago.  He is a triplet who was born at 34 weeks at 4 lbs.  He lost down to about 3 lbs once he started the projectile vomiting.  He had the surgery at about 4 weeks old (so only 38 weeks gestation) and he did fine.  He spent two nights in the hospital (one the night before surgery and one the night after).  He was a new baby following the surgery and immediately started putting on weight.  He also had reflux so he continued to spit up but not projectile vomiting, like with pyloric stenosis.  He is now 5’8″ and weighs 140 lbs at 13.  He has two or three tiny scars on his belly about 1/4″ long where they went in.  Just make sure you get a definitive diagnosis and if he has it, the surgery will fix it.  I know any surgery on your baby is scary, but worth it if it helps.

This has to be from a really happy survivor –
Put simply, pyloric stenosis is when the pyloric valve between the stomach and intestines doesn’t open properly, leading to malnutrition and possible death.  The scar from the surgery which saved my life grew from 1 centimeter to 4 inches over the course of 34 years, articulating a seam between two unfortunate layers of belly fat, the result of too many beers and not enough miles on the tread mill.  My mother, who gave me life, also saved it 12 days later, as neither my father or the doctors believed her tale of a dying infant.  She cried her way to the emergency room, and here I am still.  The scar is an em dash on my belly — always reminding me of who I love in this world the most.  To read a line on one’s palm is to know the future.  To read a line on one’s body is to know the past.

Another light-hearted story, written a few years ago for Thanksgiving Day –
Life was good for the first three weeks of my life where I learned that crying was the only needed form of communication!  It helped me get everything I could ever need, and all at break-neck speed.
After these first few weeks, I began vomiting up the majority of milk I was fed, and in no ordinary fashion.  My family recalls vividly a time where I threw up 15 feet away from me.  I ruled!  My mother, obviously very worried again, called up the doctors’ office and described my problems.  The response she received was something along the lines of, “We understand that as a new mother you’re very worried about your child spitting up, and whether or not they’re getting enough to eat… blah blah…”  After this continued for what was (hopefully) only another day, my mother brought me to the hospital where they found out that I had
pyloric stenosis
So, at the age of three weeks, I went under the knife and voila, I’m all fixed.  Now I just have a nice ol’ scar on my belly from where they sliced me!
Now, while I obviously don’t remember any of the things I’ve just said, I am still deeply thankful to all the people that helped me and my family during my grim first couple of days, and then my third week of life.  I am so blessed to have had the care and the opportunity to be in an environment in which I received excellent medical care, an opportunity that sadly many people do not have.  I’m also extremely thankful to God for healing me and putting me in the necessary situation to get such great medical aid.

A final understanding and reassuring comment from a mother –
My son was doing a lot of throwing up at about 13-14 days old and like you, every time he would eat he would throw it up.  He had Pyloric Stenosis and had to have surgery.  This is a muscle in the stomach that lets the food in and it is not opened correctly.  The surgery is what the doctors say is “routine” although to a new mother, nothing that requires cutting your baby open is “routine”, but actually, right after the surgery he was like a new child and he has been healthy ever since.
He is 2 years and 4 months old and hasn’t had any problems since.  He has a very small scar to the right and above his belly button.  The doctors at first just told me that “babies do that” (throw up that is), but I researched it until I came up with the diagnosis myself and then presented it to them and they finally took the right tests and sure enough that is what it was.  So don’t let the doctors just push your concerns aside because you’re a “new mother”.  There is something to be said for a “mother’s instincts”.  Good luck and God bless you and your baby.

4 thoughts on “Grateful for life

  1. Fred Vanderbom Post author

    I wholeheartedly agree! There are many heartening,and positive stories (and some truly delightful ones) about infant surgery, and surely it’s just some of them that are posted to be shared among the parents and survivors affected. Some of us have found that our infant surgery has left us with ongoing emotional and/or physical challenges. Sharing and recognising both the good and difficult experiences is so important.

  2. Emma

    My daughter had PS starting at two weeks of age and didn’t get the surgery until she was 2 1/2 months old! A long time to keep a baby hydrated! We saw many different docs and were in and out of the hospital a few times for dehydration. I was told that I was just a paranoid new mom and all babies vomit. She got so bad that she was finally admitted and went through all the tests they had. She drank up that barium so fast, the nurses were so surprised, but they finally diagnosed her with PS and she had the surgery.
    She has been great ever since (she’s almost 8 now); we just sometimes joke that they opened the muscle too much because of how much she eats! She is a healthy weight… she just seems to eat non-stop. But so far there has been no other complications.
    That was an extremely hard time in my life… nothing worse than watching your baby waste away in front of your eyes. I wish i had access to the internet then!!

  3. Fred Vanderbom Post author

    Thank you so much, Emma, for your story and the reflections on what you went through when your daughter developed PS. I am glad that she is doing well and trust she will have no long-term effects. Best wishes!
    Like her and many PSers I’ve been able to eat more than most without it showing – until i reached about 60! .But a few others complain of the opposite: they “only have to look at food”…
    Many of us would have liked to avoid the surgery and the scar – and I’m sorry that the parents of slow developing PS cases like your daughter’s are rarely told about the medical treatment alternative which is standard in some developed countries like Japan and used to be in others like Germany.


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