Today we are wearing blue for International #AirwayDefectsDay.
A year ago I was heavily pregnant and the thought never crossed my mind that I might have a child with medical needs. When we were able to take Kaylee home after her stay in the Special Care Nursery, we thought that the worst was over. Being first time parents who had been told that newborns are noisy, we didn’t question the sounds she made while breathing, until at 6 weeks old we were told by a nurse to get her checked out. A trip to the GP turned into a Friday night visit to the Royal Children’s Hospital, which was to be the first of many visits there. We were rushed straight through that night and tests were done, but eventually we were told that we could go home and get some rest, as long as we kept an eye on her breathing. That was a long weekend, with Kaylee sleeping on our chests for every sleep to regulate her breathing and have her close. Monday afternoon saw us back at RCH meeting with one of the top paediatric ENT specialists in Australia (thank you public health system) , who we have seen regularly ever since.
That first ENT appointment included the first of many endoscopies, a procedure where they place a camera up Kaylee’s nose and down her throat to look at her larynx, while awake and without pain relief. The scope confirmed the diagnosis of Laryngomalacia (LM). Children with LM have underdeveloped soft cartilage above the vocal cords that falls into the airway when breathing. A very common condition, for 95% of children this is harmless and simply means that the child breathes noisily until they outgrow it, at around 1-2 years of age. Further tests confirmed that Kaylee did not fall into this category, and instead had developed severe obstructive sleep apnoea (OSA). The risk that Kaylee would stop breathing for good one night was real, and forever present. Sleep studies confirmed that while sleeping Kaylee’s airways were being blocked, resulting in her oxygen levels often dipping between 70-75% (oxygen levels should never dip below 95%). Lack of oxygen to the brain has some very severe implications, which can include brain damage.
The decision was made for Kaylee to undergo major surgery at RCH, where the specialist would trim the excess tissues. At 6 months of age we took Kaylee to RCH for a supraglottoplasty, which was completed successfully in a couple of hours. Kaylee was then taken to the Paediatric ICU for monitoring for 24 hours. Very fortunately Kaylee’s airways held up well and she did not require breathing tubes at this time. Kaylee’s recovery was painful, and complicated by her severe reflux. Ben and I stayed by her side for the five days that she was in RCH, taking turns when breaks were needed. While in hospital Kaylee lost a lot of weight, as swallowing was painful and she developed a slight oral aversion. Fortunately we were able to avoid a drip by breastfeeding Kaylee while she was asleep and less aware. Once we took her home she returned to breastfeeding properly again.
Follow up sleep studies showed that unfortunately, due to her reflux Kaylee’s surgery did not fully “cure” her LM. Her sleep apnoea continues, but is now classed as significant, an improvement on severe. We continue to monitor her breathing and hope that she will overtime outgrow her LM without the need for further surgery. Throughout this journey the care received by the staff at RCH has been fantastic, and it is a relief to know that Kaylee is in good hands. Luckily Kaylee has not let her medical issues hold up her development nor dampen her spirit, and our little firecracker has also not had any weight gain issues that can be common in children with LM. Fingers crossed that soon all of these issues will be in the past.