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LGDA is now the Lymphatic Malformations Alliance. Discover the next chapter of our mission. 

Patients/Families

Brenna

Brenna

The Little Girl Who Refused to Give Up.

Written by Chante, mom to Brenna - United States

July 30, 2024 was a day that would change Brenna’s life—and the lives of everyone who loved her—forever. 

At just 11 months old, Brenna was having trouble breathing. What began as frightening breathing difficulties quickly became something much more serious. She was taken to the children's hospital, where doctors discovered that Brenna had chylothorax, a rare and dangerous condition in which lymphatic fluid leaks into the space around the lungs. 

There was an enormous amount of fluid trapped inside Brenna’s chest.  So much, in fact, that it had collapsed her left lung and pushed her heart and esophagus toward the right side of her body.  Brenna needed the fluid drained from her chest immediately.  But there was a problem.  Because of where her esophagus had been pushed, Brenna could not safely be placed under anesthesia for the procedure. The doctors had no choice.  Her chest tube would have to be inserted while she was awake.   

She was only 11 months old.  And yet, somehow, this tiny little girl began the fight of her life. The first drain helped—but it wasn't the end.  Again and again, fluid continued to build up inside Brenna's chest. Her body kept producing and leaking lymphatic fluid because something much bigger was wrong.

Doctors discovered that Brenna had a hole in her lymphatic system.  She was essentially leaking lymphatic fluid throughout her body.  But even that wasn't the whole story. 

Brenna's lymphatic system inside her chest was severely malformed. It was jumbled, tangled, and mangled, making it almost impossible for the system to function normally.  And the problem wasn't limited to her chest.  Brenna was diagnosed with generalized lymphatic anomaly (GLA) with lymphatic malformations (LMs) throughout her body.  Cysts and malformations were found in places no parent ever wants to hear about: her lungs, chest, abdomen, liver, spleen—and even inside her bones.  Her tiny body was fighting a battle that no baby should ever have to face.  

Brenna would spend 74 days at the children's hospital. During those 74 days, she would undergo an unbelievable amount of treatment.  She would be placed under anesthesia 11 times.  She would undergo 28 different surgical procedures.  Twice, she would become so critically ill that she would need a ventilator in the ICU (intensive care unit). 

There were moments when her family didn't know what the next hour would bring.  There were moments when the fear was overwhelming.  But Brenna kept fighting.  As doctors worked to open up her tangled and malfunctioning lymphatic system, another devastating complication occurred.  Brenna developed a blood clot in her subclavian vein (a large deep blood vessel that carries oxygen-poor blood back to the heart).  It was a complication that nearly took her life.  Her little body had already been through more than most people could ever imagine, and now she was fighting yet another battle.  Doctors tried twice to locate the source of the lymphatic leak.  The first two attempts were unsuccessful.  But they didn't give up.  And neither did Brenna.  Finally, on another attempt, doctors were able to locate the tiny hole that was causing so much damage.  They were able to embolize the leak.  For the first time, there was hope that Brenna's body might finally have a chance to heal. 

In September 2024, Brenna was started on sirolimus, a medication used to help control her GLA and LMs.  Slowly, the storm began to settle.  On October 12, 2024, after 74 incredibly long days, Brenna was finally discharged from Nemours Hospital.  She was going home.  But her journey wasn't over. 

Going home didn't mean the fight was finished. It meant that a new chapter was beginning—a chapter filled with follow-up appointments, medications, scans, uncertainty, and hope.  

And then something amazing happened.  Brenna began to thrive.

Two years later, this little girl is doing better than anyone ever expected.  There have been no new lymphatic leaks.  She is tolerating sirolimus well.  Her October 2025 MRI brought even more encouraging news. Her LMs appeared to be shrinking, and there were no new malformations.  After everything her body endured, Brenna continues to grow, laugh, learn, and live her life.  She is doing what doctors once weren't sure would be possible.  She is thriving. 

Brenna's story is not simply a story about illness, surgeries, hospital rooms, or frightening diagnoses.  It is a story about strength.  It is a story about hope.  It is a story about the doctors, nurses, specialists, and everyone who fought alongside her.  It is a story about a family who refused to give up.  And most of all, it is the story of a tiny girl with an enormous amount of courage.

At 11 months old, Brenna was fighting for every breath.  Today, she is showing the world just how far she can go.  Her journey has been filled with moments that could have broken even the strongest person.  But Brenna kept going. She kept fighting.  She kept growing.  And she kept proving everyone wrong. 

Brenna is a survivor.  Brenna is a fighter.  Brenna is a miracle. 

And this is only the beginning of her story. 

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