We are very grateful to one of our families for sharing their story. Big thanks to M and her beautiful boy.
Those first few weeks after bringing bubs home is meant to be a time you can soak up and enjoy all those newborn snuggles but for us, at around 6 weeks we had a lot more to take in than we ever expected.
In 2021, we welcomed our second born at a healthy 3.15kg, induced due to pre-eclampsia at 38 weeks (much like our first who was delivered at 37 wks for the same reason). Aside from some gurgles and strange sounding breathing that first night (which the paediatrician cleared him of the next morning), and jaundice which required light therapy, our boy was healthy and came home to his big sister at 5 days old. All was going well aside from some stridor noises and some difficulty with feeding, all to familiar from our first born. He seemed to be travelling along nicely. At our 6 wk checkup we were referred to ENT to check for laryngeomalacia and ensure this was all okay due to the significant stridor and changes in his feeding. Diagnosis was confirmed that same week and our ENT asked to see us in another 6 weeks to see how things were travelling but said not to hesitate to call if we had any concerns. It was only the next day I was enjoying a ‘contact nap’ with my 7 week old that I noticed he was pausing breathing in his sleep, holding his breath before almost gasping air back in. After checking in about this with our GP, we contacted the ENT and confirmed he was holding his breath up to 10 seconds while asleep but had no other significant presentation to note. This is when we had an urgent referral sent to respiratory and little did we know, this would be when everything changed. Within a week we had an home oxyimetry test completed and confirmed that he was desating (oxygen levels were dropping) enough that oxygen was required.
It’s a shock to your system, you hold back tears while you come to terms with the fact that what you questioned has become reality and it wasn’t all in your head. Our boy began his oxygen journey on .2L 24/7. This was probably the hardest part for me as I didn’t visualise having to have nasal cannulas on my child all day. After completing the training at WCH the next day our oxygen tanks were delivered and 8 months later they still have pride of place next to the cot and on the car floor.
A few months later we did our first sleep study that confirmed severe obstructive sleep apnoea and central apnoea. We were also able to stop 24/7 oxygen after his diagnosis and only needed it for sleeps which was a big relief for us. Allowing time for his skin to breath and refresh was so important as it wasn’t coping with the adhesives from the tapes supplied by the hospital.
Given this result our ENT recommended a supraglottoplasty (to improve the laryngeomalacia). This was performed at around 4 months old and was challenging to say the least! He recovered quickly though, and many other aspects of his life improved thanks to the surgery.
Following the surgery, we had our second sleep study to see if there had been any change, this was at about 6 months of age. I had gone into this study thinking we would have a significant improvement and maybe even be able to say goodbye to the oxygen for good. This made it so much harder to hear that he had basically had no improvement (or none significant enough to warrant change in his treatment). I left the specialist appointment heartbroken that this was still our life, we would still be battling with him each day to put on his cannula, to not rub them out his nose overnight and dealing with the excess snot that comes with the irritation of the tubes. I have been so incredibly lucky that I have a wonderful friend who has gone through the same thing who I am able to vent and cry with, and to have such a supportive GP who continues to be more of a support for our family than I could ever have asked. These are the things that have pulled me through the last 10, most challenging months. We continue to have oxygen for sleep, we now also have a surgery booked for after his first birthday to remove his rather large adenoids (with hope this will help his obstructive apnoea) as ontop of his oxygen needs he is an extremely poor sleeper and we have seen little to no improvement in sleep since he was 3-4 months old.
On the oxygen side of things, we’ve found our groove with a sensitive tape, removing after each sleep which has improved his skin. As well as putting the cannulas in after he falls asleep as it causes less trauma. It’s still not what I had hoped we would be doing at 10 months but we know it’s important for his growth and development and can only hope his next sleep study shows more positives than negatives.
Having a new, heavy, hugely noticeable accessory with your beautiful new baby isn’t exactly what anyone envisions when you picture the future with your new bundle of joy. People stare, you get asked the same question 100 times over and many feel they need to know ‘what’s he got that for’. Working in disability I knew all to well that this was something families I had interacted with deal with all the time but I never really understood it until now. You get used to it, you smile and give the same answer each time like it doesn’t faze you. It all just becomes a part of your day to day as time goes on. It certainly doesn’t change how your heart smiles when your baby cuddles you, smiles at you, giggles, rolls over or crawls for the first time. You can feel cheated, cheated that the first year of your babies life had included this challenge, but it makes you stronger as a person, as a mother or parent each and every day, and you keep telling yourself how important this fight was as you just don’t know what may have happened if you didn’t notice that small thing, and if those professionals around you weren’t as receiving of your concerns as they were.
If you’re starting your journey with your little love and oxygen, know that it gets easier. The process will become second nature, your baby will tolerate the cannulas more as time goes on, and, you are are doing amazing. Your baby is doing amazing. It’s not easy, its far from it, but one day it will all be a distant memory and your little love won’t be so little and that is largely thanks to you.
Stay strong, know it’s okay to feel heartbroken, cheated and devastated about this outcome, but just be kind to yourself. Something I try to remind myself of each and every day.
M’s Tips and Tricks for Oxygen Parents