In Support of Iyla Moczygemba

I’m starting this fundraiser to support my friends, Madeline and Blaine, and their daughter, Iyla, as they navigate an unexpected medical journey. Although Iyla was successfully added to insurance, the family is still facing copays, testing, and other expenses that will need to be paid out of pocket. 

UPDATE AS OF 8/20/26: After Iyla's procedure today, doctors discovered a large cyst on her bladder, larger than they had ever seen before, and were unable to clearly view her ureters or kidney. The cyst has been sent for testing, and the family is waiting to learn the next steps. 

Any donation or share would mean so much and help ease the financial burden during this difficult time.

IYLA'S STORY FROM MADELINE:

When we first learned during pregnancy that something was different with our baby’s kidneys, we obviously had a lot of questions and fears about what it could mean for her. What started as an unexpected finding on an ultrasound has turned into a journey involving multiple specialists, imaging studies, and now a plan to figure out exactly how her kidney and urinary system are working after birth.

Thankfully, through all of this, she has been doing incredibly well overall. She is here, she is growing, and other than this kidney issue, she has been doing great. We are extremely thankful for that. At the same time, we know this is something that needs to be followed closely so her doctors can protect as much kidney function as possible.

What We Found During Pregnancy:

During one of our prenatal ultrasounds, doctors noticed that her kidneys were not completely typical.

The biggest difference was the size of her kidneys. The measurements we were given the first visit was approximately:

-Left kidney: 5.6 cm (went up to  an 8.2 during pregnancy) 

      -Right kidney: 3.36 cm (normal range)

Her overall growth was reassuring at the time. She weighed approximately 3 pounds 9 ounces, was around the 74th percentile, and had normal amniotic fluid.

The ultrasound also showed that her left kidney has a duplicated collecting system/duplicated ureter. In simple terms, instead of having one ureter draining the left kidney, she has two.

One of those ureters appeared to be functioning, while the other was obstructed. The affected portion involved the upper part of the left kidney.

The concern was that urine was not able to drain normally through that obstructed ureter, which could cause the urinary system to become dilated and potentially affect the kidney over time.

At that point, we knew she would need to see pediatric urology after she was born so they could determine exactly how everything was working and when she would eventually need a surgery. 

What We Were Told About Possible Treatment: 

Before she was born, we were told that doctors would play it by ear on when to have a surgery.

The plan was to allow her to be born, see how her kidneys and urinary system looked outside of the womb, and perform additional testing to determine how much function each kidney had and where the urine was going.

We had previously been told that if the obstructed ureter continued to cause problems, one possible surgical approach could involve cutting the end of the obstructed ureter and reconnecting/reattaching it appropriately.

However, we now know that the exact procedure cannot really be decided until the specialists have the additional information they need from her postnatal testing.

After She Was Born:

Now that she has been born, the doctors have been able to get a much clearer look at what is actually happening.

Her postnatal ultrasound showed that the right kidney looks normal.

The left kidney, however, confirmed that there is a duplicated collecting system.

There is also a ureterocele, which is essentially a balloon-like swelling of the end of the ureter where it enters the bladder.

Because of the abnormal drainage, the left side also has moderate hydroureteronephrosis. In normal language, that means that both the ureter and the drainage system of the kidney are enlarged/dilated because urine is not flowing normally.

The ultrasound also showed many small cysts in the left kidney.

The doctors felt that these may be related to the longstanding obstruction and/or developmental changes in that kidney but confirmed that she does have a separate cystic kidney disease as well. (PKD)

That distinction is important because the next tests are intended to help determine how healthy and functional that kidney actually is.

Thursday, August 20 — First Major Postnatal Testing Procedure

Our first major step with the radiology team on Thursday, August 20th.

This is the beginning of getting the more detailed information the specialists need.

One of the studies that has been recommended is a MAG3 renal scan. This type of scan helps doctors see how well each kidney is functioning and how well urine drains from each kidney.

This is especially important for our baby because the ultrasound can show the anatomy and the dilation, but it cannot tell the doctors everything they need to know about how much work the left kidney is actually doing.

The other recommended study is a VCUG, or voiding cystourethrogram.

A VCUG looks specifically at how urine moves through the bladder and urethra and can determine whether urine is refluxing backward toward the kidneys.

Together, these studies can give urology a much better picture of what is happening inside her urinary system.

Next Week — Pediatric Urology:

After the radiology testing, we have our pediatric urology appointment next week.

This appointment is a really important one because urology should have more information to work with after the imaging.

They will be looking at the results of the studies along with everything that has already been seen on her ultrasounds.

The goal is to figure out the next phase of treatment and when. 

That could mean continued observation and repeat imaging if her kidney is functioning well and the situation is stable.

Or, if the testing shows that the obstruction is significantly affecting drainage or kidney function, urology may recommend moving forward with a procedure or surgery sooner than later.

So When Will She Have Surgery?

This is the part we are still waiting to find out.

We do not have a definite surgery date yet, because the doctors need the results of the upcoming testing before they can determine when surgery is necessary, what type of surgery would be best, and how urgently it needs to happen.   

If the testing shows that the obstructed portion of the duplicated system is causing significant problems, urology will be able to use those results to determine the appropriate surgical plan and timing.

So, right now, the upcoming appointments are essentially the bridge between “we know there is an abnormality” and “now we know exactly what needs to be done about it.”

We are now moving into the next stage of figuring out exactly how much function the left kidney has, how well everything drains, whether reflux is present, and when she needs surgery.

There are still questions we don’t have answers to yet, but we are finally at the point where the doctors can gather the information they need to make a real plan.