Pyloric Stenosis...

UOduckBride2be · January 2012

So I am not into the 3rd tri yet, but I thought that you guys would provide better feedback for my question.

Background: I already know that my husband and his father had Pyloric Stenosis. My FIL did not have the surgery to correct it (not sure if it was done in the 1940's), so he was sickly as an infant and nearly died and my husband's case wasn't detected until he was 11 weeks old, so while he almost died they did catch it, he had the surgery and was fine right away. Pyloric Stenosis tends to be hereditary in white males with a higher occurence in first born sons. We are having our first and it is a boy. I know they can't detect it in utero, but are any of you in a similar situation and if so do you have a gameplan for how the monitoring/surgery would go? I mean it sort of freaks me out a little that my baby could have a surgery at 4-5 weeks old. Since this is our first I still need to find a pedi and will of course have this talk with him/her, but it has been weighing on my mind lately. The bonus is I know that this is a possibility so we can be prepared.

Oh, and for those of you wondering what this is, it's a condition that isn't too uncommon where the stomach muscles thicken in the first few weeks after birth and your baby has an increasingly hard time keeping anything down so that they aren't getting the nourishment they need. It can be hard to detect at first because all babies spit up, but this becomes projectile with very little need for diaper changes so you know that food isn't getting through them. The remedy is surgery where they go in and thin out the muscles by cutting them. It's a fairly routine procedure, but the thought of it still scares the crap out of me.

Thanks for any insight and take care!

Sarah

F15Wife · January 2012

While the condition is heriditary that doesn't always mean your son will get it. Pyloric Stenosis does NOT run in my family, in fact I had never heard of it and it was my 2nd son who was the one who got it. I was told over and over by his pediatrician that he just had reflux blah blah blah until he became very sick and lethargic, soft spot was sunken in, he eventually stopped pooping and peeing and wouldn't gain weight at all. I ran across a posting on a message board and figured it out. I demanded an upper GI on him and sure enough he had it. He was taken straight to surgery at 5 weeks old. After that he was perfectly fine and ate and ate like he'd never seen food.

The surgery was done laproscopically (sp?) so yes it still requires them to be put to sleep but it isn't nearly the degree of surgery it used to be.

Try not to worry yourself too much. You already have a head start in the fact that you are informed and know what to look for.

paulinaramirez · January 2012

My son had it an was finally detected when he was two months old. It took that long to confirm what it was since he had two ultrasounds and each time they didn't see anything wrong. Well... Until it got so severe that an upper GI study caught it. It was a shock to me since doctors kept saying it was just reflux. So... This time around I know better. I would suggest just monitoring whether or not ur LO spits up/vomits too often. With my son it started wen he was 2 or 3weeks old. Just keep looking out for the signs and don't take no for an answer and keep getting him checked out . My son got to the point where he was vomiting 80-90% of his feedings. But I ve learned to watch out and not let it get to that point . He had surgery and I think it was harder on me than it was on him . His recovery was easy . The hardest part was not being able to feed him very much afterwards so there was a lot of crying. BUT!!! So worth it ... 2 days after surgery he was eating like a champ and finally gaining and not losing weight . HTH! (sorry for no paragraphs. On iPod) if u have any questions feel free to ask :-)

UOduckBride2be · January 2012

Thanks for responding, I know how lucky I am to have the heads up so to speak. I can't imagine how scary that must have been for you. My MIL told me her story and it sounded terrifying. She had no idea it was a possibility with my DH and she was a FTM so it took her a while to realize that there was a problem and the amount of spit up and lack of diaper changes was abnormal. For us I was told that there is a 25% chance our son will have it, but it's still scary when it isn't something they can check for before you leave the hospital after giving birth.

If you don't mind me asking was your sons procedure outpatient then? If not then how long was his stay? I guess it is more of the stay and recovery time that I am trying to be prepared for given that it is possibly part of our first few weeks.

Thanks again for responding.

paulinaramirez · January 2012

My son was admitted on a Thursday and was on an IV for about 24 hrs since he was so dehydrated and such. The next morning he had surgery and was able to have a 1/2 oz feeding after 3 hrs. Then each feeding was increased a 1/2 oz every hour. He was able to drink 3oz without vomiting and was released the following morning . So it was about two days in the hospital and just a lot of monitoring once we got home for a week or two . We had a follow up appointment about two weeks later. His recovery was easy but he was still sort of uncomfortable for the first week. Then again my son was colicky so not sure how much was the surgery and how much was just fussing.

patiencewilson · January 2012

My son had this...detected at 4 weeks and surgery was done. I think we were in the hospital for 3 days. I agree with the PP...it was harder on me and DH then it was on him. They made a small incision at the top of his belly button and corrected the problem. He is 5 now and loves to tell the story to anyone who will listen about how the doctors cut into his belly button to fix him and then he will lift his shirt to show them his scar.

SarahnB · January 2012

Hi from another Sarah! I'm an RN on a unit where we take care of lots of babies with this procedure done. I'll just tell you what our surgery service does, which looks like it's different from what a PP experienced with her LO- so it just depends on your surgeon and what the team prefers. After the surgery, they have a tiny little incision around their belly button covered in dermabond. The baby can't eat for 6 hours postop, and then mom either nurses for 5 min or baby can take 1/2 oz of pedialyte (then switches to formula or EBM after the 1st feeding). Then we increase feedings by 5 min/half an oz every 3 hours. If our patients are able to take at least 3 feedings in a row without significant vomiting, they go home the next morning. The IV usually stays in with fluids going until close to time to leave.

You definitely have an advantage though knowing that your LO is at risk and what to look for! Most of our families have been through several weeks of realizing there's an issue, trying reflux meds, pedi telling them their baby just needs to switch formulas, etc. until the babies get so dehydrated they end up in the ER. Hopefully you won't need any of this info though! GL!

DaynaLauren · January 2012

Lurking and a bit late, but wanted to reply!

I had pyloric stenosis @ 4 weeks old and honestly didn't even think about it for DS! Fast forward to 9d old when I woke to him projectile vomiting (and you will know it's projectile-I,m talking 3 feet out of the crib!), I immediately suspected it. Told the pedi and they said he was prob too young,etc but sent us over to the children's hospital when he didn't keep any feedings down that day. An X-ray, sonogram and other GI testing later, he was dx w/ pyloric stenosis and into surgery that night. He was released 2 days later with barely any scarring since its laparoscopic. He won't have the 3 inch scar I do. Unfortunately he had to have the surgery redone @ 5w (thy think the muscle continued to grow since he was so young, who knows-apparatly pretty rare to need to have it done more than once). Anyways he's like a diff baby since then and I'm no longer draped in towels when I feed him!

Just trust your mommy intistincs and don't stress too much about something that may not even be! GL with your LO and feel free to PM with any questions!

Ps sorry for any spelling/formatting issues-bumping from my iPad.

UOduckBride2be · January 2012

Thanks for all the info ladies! I guess there is really nothing to do but be ready for the possibility and to prepare myself that those first few weeks might end up being even more hectic if we need to make more trips to the hospital to have him checked and then possibly have surgery. It's good to be ready for that just in case. Thanks!

FredV45 · January 2014

Another and very late note, so more for the record, and not a mother here but a grandfather who had ps and the surgery in 1945 when medical science and practice were a lot more basic. All the above will be reassuring, I trust. I would just add: 1) generally the risk of father to son is quoted at 5%, and mother to son 20-25%; 2) you're fairly safe but the risk may be higher as you have ps across 2 generations already; 3) try to get a surgeon who will use the umbilical or lap approach - some of the old school still use the big incisions (i.e. big when your DS grows up), and 5) if your son does have to go through the surgery, help him to be proud and confident of his story, like "patiencewilson" above here mentioned. Best wishes.

mcgeeva · January 2014

My son had this (my first born) and surgery was not needed. He eventually grew out of it. It just made for a very messy infant stage where I had to change him 5 times a day due to projectile vommiting and constantly go to the doc to have him weighed. The noises and everything freaked me out because it always sounded like he was gagging. But he gained weight just fine and all worked out. I wouldn't worry about it until it happens. A lot has changed over the years and as I was told unless they are not able to hold weight because of it they will not do surgery.

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