A Mum's Experience with Laryngomalacia
I remember so clearly when Tom was born, absolutely perfect and looked exactly like his older brother Roy at birth. So much so, that even our obstetrician commented on the uncanny resemblance in theatre! Tom's birth was such a positive experience, just the same as Roy's - a 'textbook delivery'. We settled into our stay at Frances Perry nicely.
On day two, I remember Tom sounded very raspy at times when he was breathing or when he was crying. I mentioned it to our midwife who said it just his lungs adapting and Tom finding his voice. Our paediatrician visited us in the hospital (a routine arrangement) and confirmed that Tom was a healthy baby.
A month rolled by and were settling into life as a family of four. I remember thinking "I should be happy…I have two beautiful boys, and our family is now complete", but I kept having this feeling in the pit of my stomach that something wasn't right with Tom.
A constant niggle that wouldn't leave me alone even in the happiest of moments. I saw a local pediatrician 3 times, who thoroughly reviewed Tom from top to toe, diagnosed reflux and mentioned that I was "just being paranoid" and after our third visit began to question my anxiety levels surrounding Tom's health.
When Tom was 2 months old, I finally started to realise something was very wrong. Early on a Saturday morning, I noticed Tom's throat sucking in (a tracheal tug) and stridor breathing at times. I decided against another pediatrician visit and took Tom to our local GP who we trusted dearly. She saw the tracheal tug present and also the footage I had taken on my phone, and although abnormal, Tom's heart and lungs sounded fine.
She was perplexed and acknowledged my concerns but sent us home. I will never forget the call I received on the Monday morning from our GP who woke me from a deep sleep. She said we needed to take Tom straight to the Emergency Department at the Royal Children's Hospital. She had worried all weekend that she'd missed something…and she was right.
We presented at the Emergency Department of the RCH. We were immediately put into an infant resuscitation area as Tom presented with respiratory distress. We met with a team of paediatricians and a paediatric ENT specialist who decided they were needing to perform a bronchial scope on Tom straight away. My husband ushered me into the hall as I was upset knowing they were about to put a tiny camera all the way down Tom's throat…my husband stayed with Tom throughout the procedure, ensuring him that everything was going to be ok. Within hours of arriving at the hospital, Tom was diagnosed with Laryngomalacia.
So what is Laryngomalacia ...I had never heard of it before. It's a congenital softening of the tissues of the voice box (larynx). It causes the laryngeal structure to be floppy, allowing the tissues to fall over the airway opening, partially blocking it. It's the most common cause of noisy and obstructed breathing in infancy. The condition can be mild and also very severe.
My husband and I were in shock from the diagnosis, but at the same time, I felt a huge sense of relief…we finally had a diagnosis and a first-class medical team was there to help us.
Tom's weight had dropped dramatically in the weeks prior, and he was noted as having 'failure to thrive'. We were admitted to the RCH for a stay where his oxygen levels were monitored over a few days. The team needed to ensure Tom's airway obstruction wasn't impacting his breathing. Sleep studies were completed and confirmed that Tom's heart rate and oxygen levels were ok during sleep. It was confirmed that Tom had a mild case of Laryngomalacia, and we worked with two pediatricians, and ENT specialist, Speech Therapist (for feeding techniques) and a pediatric dietitian who developed a treatment plan.
The effort for Tom to drink was exhausting for his little body. The Laryngomalacia meant that it would take him up to 45 mins to drink only 20mls, which is why he lost so much weight. It was a risk he would aspirate if he had breast milk or regular formula as the liquids were too thin for him to drink. Tom was put on a thickened high-calorie formula to ensure he wouldn't aspirate and the high calories allowed him to feed and gain weight with as little effort as possible.
It was explained to us that if Tom didn't gain weight in the next week, they would be needing to install a gastric tube into his tummy for feeding for the next 6-12 months. Something the team kept touching on and preparing us for. Over a matter of days, Tom improved on the formula and avoided the need for the tube…he exceeded everyone's expectations. In two months he put on 1.2 kgs!
Skip forward a few months, and we had lots of outpatient appointments with an ENT surgeon and the pediatrician. Tommy was introduced to solids the day he turned 4 months and under the guidance of his dietician and speech therapist. I was taught about the risk of choking and the best food preparation for LM babies.
Three years later, and Tom is absolutely thriving. He will eventually grow out of Laryngomalacia, and each year the symptoms are becoming less and less obvious as his airway develops. Our family had amazing support from extended family and close friends. I also reached out to a couple of online Laryngomalacia support groups based in Australia and internationally, where I could share with other families also going through their own Laryngomalacia journey.