Managing surgery preparation for our kiddo with PWS
Preparing for an operation with any child is a strange experience
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Over the last few months, my husband, Jamie, and I have been preparing for our 1-year-old son, Ellis, to undergo surgery.
Experts have found that cryptorchidism, or the absence of at least one testicle from the scrotum, occurs in 86% to 100% of boys with Prader-Willi syndrome (PWS). Human chorionic gonadotropin (hCG) treatment in boys with PWS helps lower the position of the testes and increase testosterone. An orchiopexy is the surgical procedure to move an undescended testicle into the scrotum and is commonly required in addition to hCG treatment.
I want to be up-front and acknowledge the elephant in the room: This is very personal information. I went back and forth on whether to share these details. Together, Jamie and I decided that I should do so with the hope that sharing our experience will help us connect with others navigating this common occurrence in infants with PWS.
A strange experience
I’ve written about giving the hCG injections already. The treatment lasted eight weeks and involved two injections per week and weekly labs. Most challenging were the labs because, for a number of reasons, it can be difficult to draw blood from those with PWS. Medical staff would have to poke him two or three times for each draw during the first couple of weeks, which was painful for him and heart-wrenching for us. Eventually, we found that a finger poke was sufficient and best for him. While it took a little more time, he tolerated it much better. The silver lining is that he’s responded really well to the treatment.
In the beginning, the injections and labs felt like the hard part. In hindsight, they were just the buildup.
Preparing for a surgery with any child, let alone a 1-year-old, is its own strange experience. Preparing for one that could just be the first in a series adds an additional layer of emotional complexity. Ellis has no idea any of this is coming. He doesn’t know what fasting rules mean, what to expect afterward, or why a room full of unfamiliar people will be paying close attention to him that day. It’s both comforting and disheartening to know that he hasn’t had to experience the anticipation. That part belongs to us, his parents, and includes the fact that we don’t yet know if we’re circling one date on the calendar or the first of a few.
We went through something similar a couple of years ago when we were preparing for a surgery for our daughter, Emerson, who also has PWS. She had ear tubes placed, as well as her tonsils and adenoids removed, which is common among those with PWS who are receiving growth hormone treatment. I remember stressing about it for weeks, only for her recovery to be a breeze. She demanded and ate chicken nuggets later that evening with no complication. I thought that experience would make this one feel a little more routine.
Spoiler: It hasn’t.
We’ve asked a lot of questions about what the day itself will look like, what recovery typically looks like, and what complications to watch out for. We also asked what determines whether this will be one surgery or several, and the honest answer was that doctors won’t know until they see what’s going on during the initial procedure. We trust our son’s physicians and care team implicitly, and every answer helps a little, but none of them fully close the gap between preparing for something and actually going through it.
We can’t explain it to Ellis, and even if we could, it wouldn’t make it easier for him to understand why his body is about to feel different for a while. All we can do is show up for the parts we can control and continue being unwavering pillars of support, security, and comfort.
This is exactly why we decided to share it. If you’re a PWS parent or loved one who is navigating this in some form, please know that it’s a recognized part of the picture for a lot of boys with PWS. Talking directly with our care team, and asking them to walk us through everything rather than just the next step, made this feel far less overwhelming.
As for us, we’re still in it. The hCG shots are done, the surgery date is set, and there’s nothing left to do now but wait and show up. We’ll do so the same way we have for everything else so far: nervous, informed, and doing right by our child the best way we know how.
Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
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