People who have had a close experience of infant Pyloric Stenosis (whether their own or as a parent) are often bewildered and perhaps bemused by the medical mantra that “You’ll have a new child – there are no known long-term effects”.
We can be thankful that it seems that this well-meant but misleading assurance is usually (but far from always) valid, both in the short and long term. Because Pyloric Stenosis (“PS”) is rather common (2-5 in every 1,000 babies is a huge number world-wide) the widespread lack of awareness of and interest in the possible long-term effects of PS is probably a good indication that ongoing problems affect only a relatively small number – but again, worldwide this is a huge number. The web forum pages of Facebook, MedHelp, Patient, and Topix bear this out. So do the more than 100+ visits each day to my original Blog (started in 2010).
If only our experiences and the facts agreed with that mantra! This Blog is all about doing something about “What we wish we’d known” (its web address).
WordPress (which hosts my older blog) also gives me feedback, and it’s not surprising that the top number of searches there have been for information about the long-term effects of PS and the surgery for it. In this post I overview the material I posted about this to my original Blog. In the coming months I plan to post progressively to this Blog, which has an Index Page (see the banner at the top of this screen) to enable readers to overview and access its contents.
What we wish we’d known and what we want to know about the possible long-term effects of PS… please read on… Continue reading “Infant pyloric stenosis – and its possible long-term effects”
Pyloric Stenosis (PS) treatment has come a long way since my surgery for this condition in 1952. In the old days, babies were isolated after the operation, no family visiting. No nice clear plastic surgical tubing brought oxygen and fluids to the baby; the “hoses were black, an inch thick, and so numerous, I could hardly see you,” my mother told me. And my scar was formidable, like a crazy TV antenna, which grew bigger with time.
Today, rocking chairs in neonatal intensive care units, or NICUs, are often made available for family visits. The surgical tubing is light-weight and clear, adhesive strips with cartoon images holding them in place. And the scar? Smaller, given the possibility of having a laparoscopic pyloromyotomy versus an open procedure for which the incision, hence the scar, would be bigger. Even so, the scar from the open method or Ramstedt’s surgery of today is far more cosmetic than an earlier one. Finally, baby is typically released after one or two days as opposed to ten days to two weeks! Continue reading “Launching Our PS Awareness Blog”
This Blog is for people troubled because of infant pyloric stenosis – their baby’s or their own.
For many people, pyloric stenosis (“PS”) is something they’ve never heard of, even though all of us probably know several people who have had it.
Most people who have experienced PS (either as a parent or close family member, or personally) have been able to put what they often say was their “most traumatic experience ever” behind them. I suspect and hope that these folk are a “silent majority”.
However, there are many (I believe quite a sizeable minority) who are or have been deeply troubled by PS, either as the parents of a PS baby, or as a “survivor”. Continue reading “Building greater awareness”
Last December my wife and I welcomed a friend and film-maker from the US. I worked with him on a documentary he is making on a subject of common interest to all of us – the effects of infant surgery done when it was widely believed (esp. pre-1990) in the medical world that babies don’t feel or remember pain. Yikes! Yes, really.
My friend has interviewed several of us who had infant surgery in the “dark ages” and he is now recording interviews with several professionals who have written about or provide therapy for people affected by pre-conscious but unremembered (“somatic memory”) trauma.
We hope the result will be available Continue reading “After infant surgery – untangling the emotional baggage”