It all began at the routine 20‑week scan, a moment most expectant parents remember with pure joy.
But for Jody, that morning didn’t feel normal.
A sonographer tilted her head, struggled to get clear heart images, and suggested it might be positional.
Until she didn’t.
Another expert came in, peered at the tiny, fast‑beating organ on the screen, and delivered a suggestion that would change everything: your baby’s heart doesn’t look right.
She suspected Hypoplastic Right Heart Syndrome (HRHS) — a rare congenital condition where the right side of the heart didn’t fully develop and couldn’t pump blood to the lungs the way it should.
Her heart seemed to stop in that moment.
And it was only the beginning.
For two weeks, fear shadowed every thought, every breath.
In her car, trembling, she typed fragments of the medical term into her phone — plastic heart… — because that was all she could remember.
For parents whose child has HRHS, the right ventricle, tricuspid valve, pulmonary valve, and pulmonary artery can all be underdeveloped, forcing the heart to work around itself just to keep the infant alive.
Two weeks later, at 22 weeks and 4 days pregnant, specialists confirmed the diagnosis.
Jody and her partner sat with doctors who explained not only the cardiac diagnosis but, weeks later, discovered something even more complex — a suspected genetic condition called Cornelia de Lange Syndrome (CdLS), a rare disorder affecting growth and development.
The doctor explained this wasn’t something she’d done wrong.
He held her hand.
He told her not to Google it.
But she did anyway.
Before she knew it, she’d learned terms like HRHS and Fontan circulation — a series of surgeries used to reroute blood flow when the heart has a single functioning ventricle — and read about outcomes she never wanted to imagine.
Nothing felt real until the first clear shock — when the midwife mentioned termination.
Not as a judgment.
As a clinical option.
But her partner and she said no.
They felt it wasn’t their choice to decide whether Alex lived or died — only God’s.
At 28 weeks, a follow‑up scan brought fresh concern: fetal growth restriction and a small femur bone.
An amniocentesis was recommended.
When the results came back clear, she felt a relief so deep it almost hurt.
Every day after that was heavy with monitoring — twice‑weekly scans, constant check‑ins, the perpetual fear of the unknown.
She researched due dates and learned that babies with HRHS often come early — around 36 or 37 weeks.
When early November arrived, she embraced Christmas with her three‑year‑old, trying to find normalcy against a backdrop of worry.
Finally, 36 weeks — and Alex was born.
Planned C‑section.
Steroid injections.
A small but perfect moment.
He weighed 4 lb 6 oz, just as the scans predicted.
She had chosen a song — “Carry You Home.”
Not just music.
A promise.
But reality hit fast.
Even before swelling into his tiny new life, Alex faced his first emergency.
He was transferred to a larger hospital.
Procedures piled up — an emergency catheter procedure (BAS) that didn’t work, then another intervention to place a stent to improve blood flow.
Then the genetics team called.
They suspected Cornelia de Lange Syndrome (CdLS) — a rare genetic disorder associated with growth delays, developmental challenges, and gastrointestinal issues.
It wasn’t on the amniocentesis workup because only a handful of specific conditions are usually screened before birth.
He had a new mutation, not in any existing database, but doctors were 90 % certain.
The walls closed in again.
She walked out of that consultation gripping breath and fear.
She struggled with the denial — her baby was perfect to her — and the realization that “perfect” didn’t always mean medically normal.
Christmas Eve arrived — and for the first time in weeks, Alex came home.
For five glorious weeks, they lived as a family outside hospital walls — until late January brought a fresh crisis.
Alex was readmitted.
And this time, consultants warned that his heart might not handle coming off the ventilator.
But he did.
He came off.
He fought.
They worked toward getting him strong enough — aiming for a Glenn procedure, another step in staged single‑ventricle repair, connecting systemic venous return directly to pulmonary arteries.
But when the time came, it failed due to severe clotting — a hidden complication of prolonged ICU lines that had affected his veins and arteries.
That day felt like the worst yet.
The surgery that was supposed to help him seemed to betray him instead.
And yet…
Alex kept fighting.
He has a BT shunt now — a surgical tube that delivers blood toward the lungs — and for now, it continues to work.
Doctors have said he may never be eligible for another Glenn attempt or a heart transplant, though they haven’t ruled out future reassessment.
He is still in the hospital, soon hoping to have a PEG feeding tube placed before discharge, and his parents watch every day with guarded hope.
Alex is a little boy full of joy — he loves his big brother Zachary, chin kisses, Ed Sheeran, and dancing with Mum and Dad.
Though delayed, he shows remarkable awareness and determination that belies his medical battles.
For his mother, life isn’t defined by tests, procedures, or diagnoses.
It’s defined by mornings of laughter, evenings of unity, and the small moments that never should have happened after such a fight.
She has learned to advocate fiercely — to listen to her gut, to push for the right care, and to learn medical terms that once terrified her.
She has learned that decisions about termination are deeply personal and come without right or wrong — only heart and conviction.
She has learned that watching her baby suffer… leaves a guilt that never truly fades.
And she has learned that love — fierce, unrelenting, protective — is the force that keeps them going.
Alex’s story is not just medical facts and hospital days.
It is a family’s story of fear, faith, endurance, and connection.
A reminder that hope is not a destination, but a quiet courage rooted in every day survived — and every laugh earned.