Brooklyn's Medical Journey 💜

Brooklyn's story began before she was even born.

During my pregnancy, I developed severe HELLP syndrome, a rare and life-threatening pregnancy complication that affects the liver, blood clotting, and blood pressure. Everything happened incredibly fast. I had recently recovered from COVID, and while we'll never know for certain if it played a role, it's something we've always wondered. What we do know is that both Brooklyn and I almost lost our lives that day.

On February 8, 2022, Brooklyn was delivered by emergency C-section at just 25 weeks gestation, weighing only 1 pound, 2 ounces.

Instead of bringing our baby home a few days later, we entered a world we knew nothing about.

Brooklyn spent 231 days in the NICU, where every single day was a fight for her life.

Because she was born so early, her lungs were extremely underdeveloped, and she spent over three years on a ventilator, eventually working her way down to only needing it while she sleeps.

During her NICU stay, Brooklyn received multiple blood transfusions, battled serious infections including MRSA, underwent emergency surgeries, and endured more procedures than we can count.

One of the biggest scares came when her intestines ruptured, requiring emergency surgery to place a drain and save her life. Ill never forget that call, when the doctor said "She needs surgery and the chances are not good, or you can do the more humane thing and let her go" Some Doctors need to work on their bedside manor! 

She also developed osteopenia of prematurity, causing her bones to become so fragile that she suffered multiple fractures in her left arm, leg and rib. She was in an induced coma and when i went to change her, her leg was hard i requested an x-ray. They said it was at least 2 weeks old, and no one noticed.. 

There were several times doctors told us there was nothing more they could do. More than once we were encouraged to call our family because they didn't think Brooklyn would survive.

One of the biggest turning points in her journey came when I reached out to Nationwide Children's Hospital for a second opinion. We had a meeting with her doctors and their specialists recommended different ventilator settings, and after those changes were made, Brooklyn began improving. Those recommendations made such a difference that her hospital later adopted those ventilator settings for other babies in similar situations.

Because Brooklyn was so critically ill, transferring her to another children's hospital was discussed several times. Thankfully, with the guidance of outside specialists and her incredible medical team, she continued to fight.

After 231 days, Brooklyn finally came home with a tracheostomy, G-tube, ventilator, oxygen, suction machine, pulse oximeter, medications, and parents who had quickly learned to become nurses, respiratory therapists, and full-time caregivers.

Leaving the NICU wasn't the end of our journey.

It was only the beginning.

💨 Bronchopulmonary Dysplasia (BPD)

Diagnosed: February 8, 2022

Because Brooklyn was born so prematurely, her lungs were not fully developed. She was diagnosed with Bronchopulmonary Dysplasia (BPD), a chronic lung disease commonly seen in extremely premature babies who require long-term ventilator support.

Today, Brooklyn still receives daily breathing treatments, uses a tracheostomy, sleeps on a ventilator, and occasionally requires supplemental oxygen when she needs extra support.

🫁 Tracheostomy

Placed: August 2, 2022

After months on a breathing tube, Brooklyn received a tracheostomy to provide a safer, long-term airway.

Her trach requires suctioning throughout the day, routine trach changes, humidification, and constant monitoring. It has become part of our everyday life and is what allowed Brooklyn to finally come home after spending 231 days in the hospital.

🥣 Gastrostomy Tube (G-Tube)

Placed: August 2, 2022

Brooklyn receives all of her nutrition, hydration, and medications through a feeding tube placed directly into her stomach.

Although she once passed a swallow study and was able to safely eat by mouth, everything changed in 2024 when she suddenly lost the ability to swallow safely. Today she receives all of her nutrition through her G-tube. We are hoping to get her eating again soon.

🧠 Cerebral Palsy

Diagnosed: April 18, 2024

Cerebral palsy affects Brooklyn's muscle control, coordination, balance, and movement. It was caused by a brain injury related to her extreme prematurity.

Brooklyn has made incredible progress through years of physical therapy. She can now sit independently and crawl on her own. She is able to stand with assistance for short periods, and we're continuing to work toward her next goal—taking independent steps. Every milestone is hard-earned, and we're so proud of how far she's come. 💜

🌈 Autism, Global Developmental Delay & Communication

As Brooklyn grew, it became clear that her challenges extended beyond her physical health.

She was diagnosed with Autism Spectrum Disorder and Global Developmental Delay, meaning she learns, communicates, and experiences the world differently than most children her age.

Brooklyn is nonverbal and communicates in her own unique ways. She lets us know exactly how she's feeling through smiles, laughter, eye contact, facial expressions, sounds, and body language. She may not use words, but she has a personality that shines brighter than anything else.

Because of her extreme prematurity and cerebral palsy, Brooklyn has faced significant physical challenges. Every milestone has taken months or even years of hard work through physical therapy, occupational therapy, speech therapy, and countless hours of practice at home.

Today, Brooklyn is able to crawl independently and can stand with assistance for up to one minute at a time. While these may seem like small accomplishments to some, they are milestones we once weren't sure she'd ever reach.

🍽️ Severe Dysphagia with Aspiration

Diagnosed: April 2024

In early 2024, our lives changed again.

Almost overnight, Brooklyn began having severe gagging and choking episodes. Food she had previously eaten safely started coming out of her tracheostomy.

A swallow study showed she could no longer trigger a swallow and was immediately aspirating, meaning food and liquids were entering her airway instead of her stomach.

She was diagnosed with severe dysphagia with aspiration and became NPO (nothing by mouth) for her safety.

Since then, we've traveled across the country searching for answers.

Brooklyn has undergone multiple swallow studies, bronchoscopies, triple scopes, FEES exams, upper GI studies, MRIs, hearing tests, cultures, CT scans, X-rays, and evaluations at Primary Children's Hospital in Utah, Children's Hospital Colorado, Children's Hospital Los Angeles, and soon Boston Children's Hospital. Despite all of this testing, we still don't have an answer as to why she suddenly lost the ability to swallow.

🦴 Tethered Spinal Cord

Diagnosed: July 30, 2024

An MRI performed after abnormalities were found near a sacral dimple led to the diagnosis of a Tethered Spinal Cord.

A tethered spinal cord occurs when the spinal cord becomes attached inside the spine instead of moving freely. As a child grows, this can place tension on the spinal cord and affect walking, bowel function, bladder function, and nerve function.

Brooklyn is scheduled to undergo surgery to release the tethered cord in hopes of preventing further damage and possibly improving some of her symptoms.

🚽 Kidney Stones

Diagnosed: August 15, 2024

She was diagnosed with chronic nephrocalcinosis, a condition where calcium builds up within the kidneys, increasing the risk of kidney stones and kidney damage.

Over time, one kidney stone grew to 10 millimeters, requiring surgery and a temporary stent before it was successfully removed. She continues to be followed closely by pediatric urology and we are looking for a nephrologist that takes her insurance. The one we have here is unfortunately not in network. 

👓 Legal Blindness

Diagnosed: October 15, 2024

Brooklyn was diagnosed as legally blind by her pediatric ophthalmologist.

She wears glasses but usually just throws them. She can see some things, she just has really bad vision. We are not sure what she can/cant see. 

🧠 Epilepsy

Official Diagnosis: August 27, 2025

Although seizure activity was suspected since infancy, we first caught one while in the NICU and has been on Keppra since. It took years and multiple EEGs before overnight seizure activity was finally captured even thought we would catch videos of her doing it, seemed they never caught it on the EEG.

Brooklyn was officially diagnosed with epilepsy after a prolonged EEG showed seizures during sleep. She continues treatment with anti-seizure medication and remains closely followed by pediatric neurology.

💩 Chronic Constipation

Diagnosed: July 20, 2023

Constipation has been an ongoing challenge requiring daily medication and careful management.

One unexpected discovery was that when Brooklyn's constipation is under control, her severe gagging episodes often improve as well, making bowel management an important part of her overall care.

💜 Brooklyn Today

Today, Brooklyn is a happy, funny, stubborn, determined little girl who loves music, lights, colors, bubbles, swinging, and making everyone around her smile.

She spends her days in therapies, doctor's appointments, and traveling across the country for specialized medical care. Every milestone she reaches is one we were once told might never happen.

When people look at Brooklyn, they often see a long list of diagnoses.

We see a little girl who has beaten impossible odds.

A little girl who has taught us that progress doesn't have to be fast to be incredible.

A little girl who has changed our lives forever.

This is Brooklyn. This is why we're Brooklyn Kelly Strong. 💜