‘We could see FEAR in his eyes. His little body was fighting as hard as it could.’: Mom shares son’s asthma diagnosis journey, urges ‘follow your instincts’

More Stories like:

“It took contracting a respiratory virus for any doctor to look at my son’s symptoms.

Rory is a 15 month old little boy who has finally been diagnosed with asthma after fighting for his life.

Rory’s father, Koby, and I first noticed his symptoms around 12 months of age. He was coughing all hours of the night, with no other symptoms to show it was anything else. This continued for months. We had appointment after appointment with his doctors. Multiple visits to hospitals, with the same outcome, ‘He is too young to diagnose with asthma.’ We were told it was ‘just a cough, he will grow out of it.’ Koby and I know our son and just like his father, I knew he had asthma.

dad holding his son
Courtesy of Millie Martyn

Koby’s asthma symptoms started when he was young. Being continuously admitted into hospital at only 1 year old with breathing support. His oxygen levels dropping as low as 42, he would often rely on a nebulizer to steady his breathing. To this day, Koby still suffers through the winter, fire seasons, and during physical activity. Koby often relies on the use of relievers to control his breathing.

We knew this highly heritable disease had been passed on to our son. For months, I would spend late nights researching asthma, symptoms and stories of little ones with the same experiences. I wrote on multiple mothers group pages asking for advice and I always seemed to receive the same feedback, ‘He is too young to be diagnosed with asthma.’

Early July 2021, along with his usual nightly coughing, Rory woke with minor cold symptoms, which I put down to teething, knowing he was going through those 2 year old molars early.

We continued with our routine for the day. Rory attended his daycare as usual, while Koby and I would attend work. Around mid-day, I received a call from his educator advising me of some irritable, aggressive behavior and of course his inability to breathe correctly. His educator had previously mentioned she noticed a tug in his neck and asked if we had an asthma plan in place for them to follow, to which I had to advise her that he was not diagnosed. She also thought that it was unusual because she had noticed symptoms on an occasion. I knew straight away what kind of a day it was going to be, so I raced to his daycare and headed straight to his GP, where he was put on antibiotics for ‘bronchiolitis.’ We were sent off with a follow up appointment 24 hours later. This then followed with a high fever, constant coughing and wheezing, a sleepless night and a whole lot of mucous. Phone calls to the emergency departments in hospitals advised us that he just needed time and pain relief to soothe his fever. I was sure there was more to it, but given the amount of similar advice, I reassured myself they were all right, I was wrong, and he had a bacterial infection which was treatable with antibiotics. We just needed to be patient, follow their instructions, and our little boy would be on the mend in no time.

woman and her son
Courtesy of Millie Martyn

The following day went on and Rory seem to worsen, I was sure the antibiotics would have started to work their magic by now. I impatiently waited for his appointment to come around, so I called and insisted we come in sooner. Upon arriving, I immediately asked that he have his oxygen and breathing monitored. I could see his tug worsening and his belly fighting harder than the hour before. His breathing escalated from 50 to 62 breaths per minute. We were finally sent to the hospital, where he was immediately admitted and had numerous swabs and tests taken. He was struggling more and more by the hour. Before long, he was connected to hiflow oxygen with his levels dropping to low 70’s. His little body was fighting as hard as it could. We could see see fear in his eyes and the frustration of not wanting to be poked and prodded anymore. Rory started to deny food and refused any fluids. We began to worry for his life as he continued to worsen and could not keep consciousness. Our little boy was slowly crumbling.

We felt helpless and felt like no one would listen. As the days went by, we tried everything to make him feel more comfortable and to encourage him to eat or drink. He denied even his most favorite things in the world. If chocolate could not get this boy to eat, nothing could. He had a few visits from his older sisters to try and distract him and brighten him up, even they struggled to bring him to smile. We watched and held our boy for what felt like weeks, hoping he would just miraculously wake up and start jumping around.

young boy with breathing tube
Courtesy of Millie Martyn

Two days went by and he was given a nasogastric tube to up his fluid intake. I would not wish this upon any child to go through, or any parent to have to hold their babies down while they have this inserted. It was heartbreaking to say the least. But I knew it was for the best, his fluids were important and finally maintained from here.

It was later confirmed from his swap results that Rory had contracted metapneumovirus, a respiratory virus often found in young children. This virus is usually manageable, only showing slight cold and flu symptoms and rarely often leads to hospital admittance. In Rory’s case, it was more severe due to being an asthmatic. Rory was finally diagnosed with asthma after several visits from multiple pediatric doctors. He was eventually administrated Ventolin and put on a four-hourly schedule. Once he stared the Ventolin, we immediately noticed a change in the sound of Rory’s breathing, the wheezing had slowly eased. Each time he was treated, there was a slight change in his behavior- he seemed to become a little brighter, and a little more aware each time.

On the fourth day, day two of being treated with Ventolin, Rory improved massively. His breathing slowed, the tug in his neck had gone and his oxygen levels increased. He was finally accepting fluids on his own and his little smile slowly resurfaced. The sight of his sisters brought him joy again, and his cheeky personality resurfaced. He was suddenly back to being his happy little loveable self. He only improved more and more after being discharged on day six.

mom with her children
Courtesy of Millie Martyn

Rory is now home and on a daily preventer and reliever. Some days and nights are better than others. He can be his energetic, happy little self, or he can be slow and struggle with his breathing. But now, with a diagnosis, Rory’s asthma is treatable and easily managed.

Asthma is a scary and fatal disease. Whether it is severe or minor, it should be treated seriously and diagnosed earlier in children. If we had waited any longer, I fear we could have potentially lost our little boy because ‘he is too young to be diagnosed.’

Moms, Dad and Guardians, follow your instincts- you know your child and the importance of their change in behavior and health more than anyone ever could.

woman holding her baby
Courtesy of Millie Martyn

If you think yourself or your little one could be an asthmatic, I strongly encourage you to reach out and seek numerous opinions before it is too late.”

This story was submitted to Love What Matters by Millie Martyn from Newcastle, Australia. You can follow her journey on InstagramSubmit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories like this:

‘I was blindsided. ‘Mom, isn’t it crazy we’re all going to die?’ He couldn’t sleep. ‘Well, unless asthma gets me first.’: Mom encourages parents ‘assure your babies they are loved and safe’

‘Mommy, I want to go to a restaurant,’ my daughter interjected. Our favorite eateries may not make it.’: Mom of daughter with asthma says ‘one sniffle, one tiny cough sends me into a frenzy of worry’

‘His leg was rapidly turning black. ‘Your son is the sickest kid in this hospital. We don’t expect him to make it.’: Mom shocked by life-threatening necrotizing fascitis after being told it was a ‘regular bug’

‘She knew something was wrong with her best friend. Her brother was now a quiet, sick little boy. He never wanted to play.’: Sister dotes on her once ‘lively, energetic’ little brother now suffering from childhood cancer

Do you know someone who could benefit from reading this? SHARE this story on Facebook with family and friends.

 Share  Tweet