The Child Everyone Was Trying to Fix

Aug 26

4 min read

Sometimes, you have this gut feeling you cannot shake - something is wrong, very wrong, ‘life-course-altering’ wrong - but you cannot put your finger on it.

Looking back, it took more than a few minutes to gather myself in those moments. I watched the room fill. I watched four doctors attempt to gain access to veins without success. I watched his frail, limp body drain of colour, mottle and break out in a vibrant rash. I watched as a needle was put into his bladder through his stomach in an attempt to gain urine, without success.

I watched the monitor flatline.

Time stopped for me, and I was completely useless in helping my 1-week-old newborn.

Somewhere in the chaos, a nurse noticed I was standing in a room I should not have been in. She told me to turn around and face the sink. I have a memory of a handwashing poster permanently etched in my brain. Steps 1 to 5, I won’t bore you with the details, but reading that kept me grounded.

I remember holding him in the days to come, the blue star blanket crusted with my endless tears. The blurry faces in scrubs walking in and out. Day 5 was pivotal. That was the day I was told would be the hardest for survival. I was told that if and it was a big if, my son could make it through Day 5, his chances of survival would greatly improve.

Yes, my son had a difficult start to life. RSV, a common cold virus, and pneumonia were the first culprits, resulting in 7 weeks of hospital care and the treatment he needed to fix him, keep him safe, and support his developing immune system.

At the 4-month check-up, the nurse weighed him. He was born around the 50th percentile for weight and height. By 4 months, she searched for the words to tell me that my son did not register on the chart at all for either. I had successfully breastfed my firstborn, and I was determined to do the same. My son was below the 3rd percentile, and it was quickly recommended that we top up his feeds as soon as possible. This would fix him, have him back to normal, just as he should be.

Sleep was a thing of the past. With a toddler and a newborn, survival on willpower was how it was. My son did not sleep, not for longer than 30 minutes at a time. Solids were advised to start immediately. My son still did not register on the charts, and I needed to be tougher with a sleep routine. All children thrive with good, nutritious food and a decent sleep routine. This was the key to fixing this mess.

Time kept on ticking; progress was continually halted. Food refusal was one of our largest barriers to overcome, and everyone had an opinion on how to fix it. All these messages came with love; deep down, I knew that.

Sitting at playgroup as a proud mother, it became clear when one mother provided her famous caterpillars made from various organic berries that no child would ever refuse to eat. There was no way that caterpillar was going anywhere except across the table, courtesy of my child’s wild ability to hurl anything and everything in disgust.

Honestly, I was questioning my ability as a mother. How was I getting this so wrong?

Supplements were prescribed by the doctors. Feeding tubes were attempted, yet they would not last an hour before being ripped out, even after bandaging his hands to bind them shut. Supplements were being vomited across the room.

I was failing at the prescribed fix.

Motor milestones were not being reached. Speech milestones were completely absent. I was doing all that was suggested by child health nurses and doctors alike. I was told again that I must try a little longer, hold out a few more weeks as the fix would work eventually. Watching his peers surpass him each week, I was at a dead end.

Sitting in another silent room, white walls and an eyesight poster on the wall, I was told that my child met the criteria for Global Developmental Delay (GDD) and Failure to Thrive (FTT).

My train of thought was stuck in a loop. So, that is it? This is our life. Take the referral to the next doctor who will have a magic fix?

So we went. We paid. We were politely told you cannot fix either GDD or FTT. They were facts of life; most children would outgrow these. Keep doing what you are doing.

Oh, and that will be $450, thanks.

Time does not wait.

Days, weeks, months flow on.

Our son was 18 months old and still was not registering on the weight or height charts. He was not sleeping. He was not eating. His speech was nonsensical.

Appointments that led nowhere continued.

I was beyond frustrated. Someone had to be able to help. He deserved that.

Stubborn, difficult, defiant, annoying, bad, too hard… Just a few phrases that were used by people in my son’s life who loved him to describe his behaviour.

I cannot lie, some days were long! We did not understand him, on so many levels.

I kept pushing back on the medical experts. Something had to give. We needed a break. He needed a break. We were failing him.

A guilt that cuts deep. A feeling that took me all the way back to week one of his life.

Sidelined.

Useless.

Alone.

Lost.

Somewhere along the way, every conversation became about what was not working. Weight. Height. Sleep. Feeding. Milestones. Diagnoses.

I had become so consumed with finding the right fix that I realised I could not remember the last time someone had asked me about the little boy underneath all the charts and referrals.

I had spent 2 years searching for anyone with an answer. Every appointment held the anticipation of hope. Every strategy promised another fix.

Eventually, there were no more fixes.