Parental advocacy matters

Bringing a child into the world is meant to be one of the most joyful and reassuring experiences in life.  For me, it quickly became something very different. It became an experience that revealed just how critical communication is in healthcare, particularly when advocating for my son.

The moment I knew something was wrong

After my son was born, I noticed that he didn’t cry for a long time.  When he was placed on my chest, I couldn’t hear him breathe or feel him move.  I immediately felt alarmed.

There were doctors and nurses present in the room, yet no one seemed to react.

I asked ‘Is he okay?’

Only then did someone step in to assess him.  It was quickly determined that he needed to be taken to the Intensive Care Unit (ICU).

In that moment, I learned something important.  Sometimes, the first alarm comes from a parent and it needs to be taken seriously.

Reassurance without answers

In the ICU, my son was placed on CPAP (a machine to help him breath).  A naso gastric (NG) tube was also inserted, as he was struggling to swallow and showed overall weakness.  I was told this was likely due to prematurity and the magnesium I had received during delivery, which could make babies lethargic.

But as time passed and the magnesium levels dropped, there was no improvement.  When I asked why, I was reassured ‘Babies are resilient and he will be fine.’

In honesty, my concerns didn’t feel heard.  I felt dismissed.

When someone finally listened

Eventually, one doctor took a closer look and shared my concern.  Genetic testing was ordered. As it became increasingly clear that my son wasn’t improving, more tests, including an MRI scan, echocardiogram and several ultrasound scans were performed.

These tests revealed multiple abnormalities.

What was most difficult to process was that non of these findings had been communicated to me during pregnancy, despite frequent monitoring in my final trimester.

This raised a painful question: how much had gone unsaid?

Missed opportunities to act

During the NICU (neonatal intensive care unit), I noticed that my son’s oxygen levels dropped during feeding.  I raised this concern multiple times.  Again I was reassured and no immediate action was taken.

Later he developed aspiration pneumonia and required IV antibiotics.

Only after he was diagnosed with a rare genetic condition did my concerns begin to make sense clinically, as aspiration was a known risk.

When communication becomes pressure

After his diagnosis, I was encouraged to transfer him to another hospital, even though he was stable and his care needs could have been managed as an outpatient.  During that stay I was pressured to consent to a surgical feeding tube.  I was told that if I didn’t agree, my son could remain hospitalised indefinitely.

When I asked for evidence supporting this decision over the current approach, I was told there wasn’t clear data available. Despite that, the plan didn’t change.

This didn’t feel like a conversation.  I felt pressured.

The lasting impact

My son remained in hospital for 3 months, despite being stable.  I feel we lost precious bonding time together.

It was only after I contacted my insurance company, who determined that he no longer met the criteria for hospitalisation that he was discharged. Only then did things begin to move quickly.

Reflection: Why communication matters

This experience wasn’t just about medical care, it was about how communication shapes that care.

The difference between being heard and being dismissed can change outcomes.

The difference between collaboration and pressure can shape trust.

And the difference between transparency and silence can leave lasting emotional impact.

What healthcare professionals can learn

• Actively listen to parents.  We are often the first to notice subtle but important changes.
• Communicate findings clearly and promptly.  We have a right to know if things aren’t right.
• Engage in shared decision making, don’t use coercion.
• Recognise the longer term impacts of your interactions with parents.  Your actions shape how families remember their entire experience.

What other parents can learn

• Trust your instincts and make yourself heard
• Ask questions and seek clarity.  You have a right to understand what is happening and why.
• Document your concerns and keep a track of any conversations you have had.  In the US, we have to share information with our insurance companies.
• Advocate for your child and yourself.  You are essential to the care team.
• Seek second opinions if you don’t feel you are being taken seriously.

Note: this story is shared as told by a mother and reflects their experience and perspective.