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Benny’s Diagnosis: Lymphatic Malformation, an Undescended Testicle, and Learning How to Navigate the System
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Shortly after Benny was born, doctors couldn’t feel his right testicle.
At first, we thought we were dealing with a fairly common newborn issue. An undescended testicle. Something to follow up on with a pediatric urologist and figure out from there.
An ultrasound found it high in his pelvis. It was there, and it had normal blood flow, which was reassuring. But the ultrasound also found something unexpected: a fluid-filled area nearby that needed a closer look.
That led to more imaging and eventually an MRI. We learned that Benny has a large lymphatic malformation in his abdomen and pelvis.
A few months ago, I couldn’t have told you what that meant. Now we’re having conversations about sclerotherapy, blood supply, and two-stage orchiopexy. It’s a lot to learn when the person you’re learning it for is your baby.
I wanted to write down our experience while we’re still going through it. Maybe another parent will hear some of these same words, start searching, and find something here that helps them understand what to ask next.
This is our family’s experience, not medical advice. Every child’s anatomy and treatment plan can be different.
A lymphatic malformation is a collection of abnormal lymphatic vessels and fluid-filled spaces that formed before birth. The picture that helped me was a cluster of little water balloons, sometimes connected to each other.
It isn’t cancer. Learning that was a relief. But its size and location still matter. Children’s Hospital of Philadelphia has a helpful explanation of lymphatic malformations.
Benny’s extends through part of his abdomen and pelvis and toward his right groin. The report described it wrapping around some major blood vessels without significantly narrowing them. His right testicle is high in the pelvis and appears to be in or around the malformation.
That may have contributed to the testicle not descending. We’re still learning exactly how everything fits together.
The question became more complicated than how to bring the testicle down. We needed to understand how doctors could do that safely with the malformation occupying the same area.
After the MRI results, I leaned heavily on the deep research feature in AI to pull together information about the diagnosis and possible treatments.
Having a simplified, general understanding was incredibly helpful. I wanted to understand what a lymphatic malformation was, what the medical terms meant, and what doctors were trying to accomplish with each procedure.
There’s a lot of information out there. Being able to bring it together and have it explained in plain English made it easier to take in. I could ask follow-up questions, have something explained another way, and keep going until it made sense to me.
That helped me follow the conversations with the doctors. When they mentioned a procedure, I had some understanding of what it involved and could focus on what they were recommending for Benny.
I’m glad I spent the time learning. Even a basic understanding made the whole situation feel more manageable and helped me ask better questions.
We’ve been working with interventional radiology and pediatric urology at Primary Children’s.
Interventional radiology, or IR, is focused on treating the lymphatic malformation. Urology is focused on the testicle. Benny’s situation sits right where those two specialties overlap.
Early on, it wasn’t always clear to us how the plans connected.
Each doctor could explain their part. We still needed to understand the order, what one team needed from the other, and whether treating one issue could make the next procedure easier or harder.
That has been one of the biggest lessons for me: don’t assume everyone is working from the same complete picture.
Medicine is incredibly specialized. Someone can have a lot of experience in one area and still need another specialist’s judgment about the next part. We needed to ask whether those conversations had happened directly.
Who is coordinating the overall plan? Has IR talked with urology? What does urology need to see before operating? Who tells us when it’s time to schedule?
Those are basic questions, but the answers matter.
I didn’t expect part of parenting to involve coordinating between medical specialties. With this situation, we’ve learned that we need to stay involved in connecting the pieces.
One of the most useful things we did was talk to people.
We started asking people we trusted whether they knew anyone in pediatric urology or vascular anomalies. Who had experience with complicated cases? Who did other doctors respect? Who would they send their own child to?
People have been willing to help. Sometimes that meant answering a question. Sometimes it meant making an introduction or pointing us toward someone with more relevant experience.
You don’t always know who knows someone until you ask.
That’s something I would tell another parent: don’t be afraid to talk about what you’re going through, to the extent you’re comfortable sharing it. You don’t need to have all the terminology right before asking for help.
Those conversations helped lead us to Dr. Wallis.
We had already appreciated Dr. Young and the time he spent helping us. Because Benny’s case involved this unusual combination, we wanted another experienced urology perspective.
I’m glad we got it.
A second opinion can help you understand the reasoning behind a plan, even when the recommendation is similar. It gives you another opportunity to ask the questions you didn’t know to ask the first time.
Dr. Wallis helped us understand why treating the malformation first was reasonable in Benny’s case, what a staged surgery could involve, and what would need to happen before we scheduled it.
We left with a clearer understanding of the next steps. That was valuable all by itself.
The first proposed treatment is sclerotherapy with Dr. Arnold and the interventional radiology team.
In plain English, doctors use imaging to guide needles into parts of the malformation and inject medication intended to shrink those areas over time. The treatment causes inflammation, and swelling can follow. Sometimes more than one session is needed. CHOP’s overview explains sclerotherapy in more detail.
For Benny, the hope is that shrinking the malformation will make the area more manageable before urology operates.
We also needed to understand the tradeoffs. We discussed whether inflammation or scarring from treatment could make later surgery more difficult. That was another reason it mattered for both specialties to weigh in on the sequence.
After that, the likely urology plan is a two-stage orchiopexy, possibly using a Fowler-Stephens approach. Orchiopexy means surgery to move the testicle into the scrotum and secure it there.
Because Benny’s testicle is high up, the main blood vessels supplying it may be too short to allow it to come down safely in one operation.
With the staged approach we discussed, the first operation would involve dividing the main testicular vessels while preserving smaller vessels that already provide another route for blood supply. The waiting period gives that alternate supply time to develop. Several months later, the surgeon would attempt to bring the testicle down. There is still a risk that the blood supply won’t be sufficient. The European Association of Urology describes this staged approach in its pediatric guidelines.
That took some explaining for me to understand. It’s a strange thing to hear that part of protecting a testicle might involve dividing its main blood vessels.
Dr. Wallis explained why taking it in stages can make sense for a high testicle like Benny’s. He also discussed timing, including the possibility of starting the first stage between six and twelve months in Benny’s situation.
One thing he said that gave me confidence was that if he goes in and the anatomy doesn’t look safe, he would stop. He could take pictures or video, regroup with the team, and make a better plan.
I appreciated hearing that. I want someone experienced enough to know when to slow down and willing to explain that possibility ahead of time.
As of now, this is the sequence we understand:
There are still decisions inside that plan. We don’t yet know how much the malformation will shrink, how many treatments will be needed, or exactly what the surgeon will find.
But we understand the purpose of the next step and what information we’re waiting for. That helps.
My biggest advice here is to ask all the questions. Even the ones that feel dumb.
If I don’t understand something about a procedure on my son, I need to say that. Nodding along doesn’t help anyone.
It’s okay to ask a doctor to explain something again or use simpler language. It’s okay to ask how often they do a procedure, who will be doing it, and what happens if things don’t go as expected. I’d rather ask something basic than leave with an assumption that turns out to be wrong.
I’d also recommend asking the doctor if you can record the appointment, then having it transcribed afterward. There’s a lot to remember when you’re trying to listen, think of questions, and process what it all means for your child.
Having the conversation to go back to gives you a chance to absorb it again and turn it into useful notes. It also lets you focus more on the conversation while you’re there.
I wish I could end this with everything resolved.
We’re still working through appointments, treatment decisions, and uncertainty. We have a plan, and that plan may need to change as we learn more.
One of the harder parts of a rare diagnosis is realizing there may not be someone who has seen your child’s exact combination of issues over and over. Even very experienced doctors may need to work through parts of it together.
What we’ve come to value is experience, clear communication, and a willingness to be honest about what’s uncertain. We want doctors who will talk to each other and take the time to make a careful decision.
Benny is doing well day to day, and we’re grateful for that.
If another parent finds this after getting unexpected news, I hope it helps you feel a little more prepared for the next conversation. Learn what you can. Ask people for help. Get another opinion. Keep asking until you understand.
We still don’t know every outcome. But we feel more informed, more organized, and more confident in the people helping us care for Benny.