"Baby breathing issues"

My baby had breathing complications and extremely noisy breathing (all recorded) from about 4 weeks of age onwards. With multiple visits to Bunbury Regional Hospital only for the Paediatric Team to constantly seem to shrug us off, not listen to our concerns or take them seriously and then telling us that there is nothing wrong with our baby. Even after being shrugged off by medical professionals, I still felt something was wrong and our baby ended up being taken by ambulance back to the hospital at 9 weeks old.

We visited Bunbury Hospital in 2021 with our baby because of breathing issues and having moments where they were having long pauses in between breaths. We were admitted overnight for observation, but we got sent home because ‘nothing was wrong’. One of the Doctors in the emergency department told both me and my partner that a child under 1 turning blue is completely normal and not a concern.

24 hours after being discharged we were back in an ambulance because of the same breathing issues. During this ambulance ride our baby was turning blue and I got told that there wasn’t an oxygen monitor for babies on board the ambulance, so we would have to stop and collect one. This to me raised alarm bells and I got the impression that my infant, who is having complications breathing and going blue, wasn’t a serious issue.

When we arrived at the hospital we had to wait to be seen. This again made me feel as if my child’s breathing difficulties and them turning blue wasn’t a priority for staff. After finally being sent to the paediatric ward, once again we were made to feel we were over reacting and there was no cause for concern for our baby. We told the doctor we wanted a second opinion and to be seen by Perth Children’s Hospital’s ENT department as we felt something was clearly wrong.

We got discharged from Bunbury and drove straight to Perth Children’s Hospital. 20 minutes from our destination our baby completely stopped breathing and I ended up having to ring 000 for assistance. This was the longest, most terrifying 20 minutes of my life, and the only thing I could think of was the fact that Bunbury Hospital told me multiple times that nothing was wrong with my baby. This made me furious. I stayed on the phone to 000 until we arrived at PCH and got taken straight into the emergency department and seen to straight away. We got admitted and had to stay in PCH for about a week.

Our baby had multiple tests and scans done where they got diagnosed with Laryngomalacia. During their stay at PCH they had multiple episodes where they would go blue and their breathing became restricted. This then caused my baby to have seizure-like episodes because of the lack of oxygen to the brain. I raised my concerns with one of the nurses about my baby's ‘episodes’ for the nurse to turn around and call me a ‘paranoid’ parent and tell me that my baby wasn’t doing anything unusual and they were just sleeping. I managed to capture a couple of these episodes on video to show medical staff.

Our baby was booked in for surgery late 2021, they were 12 weeks old. We then stayed at PCH for a few days following surgery for monitoring. After my baby's procedure one of the Drs came to speak to both me and my partner and explained that the surgery went well, but they found a ‘tumour’ at the back of their tongue on their soft pallet. Hearing the word tumour was heartbreaking and infuriating as Bunbury had dismissed our concerns.

When asking what can be done about the tumour we got no answers. The doctor couldn’t tell us what it was or what can be done about it. They told us to wait and have a follow up appointment with the ENT in 6 weeks to discuss future plans. We asked multiple nurses what this ‘tumour’ meant for our baby, no one seemed to have answers or know what we were talking about. We were discharged and sent home with no answers but a follow up at 6 weeks post op.

We were told by the doctor that at the 6 week post op appointment they were going to insert a camera down our baby's throat to make sure they are healing from the surgery, and to check the tumour isn’t causing issues. This scope did not happen, and I got told my baby's fine now because they are putting on weight. Our appointment was supposed to be an hour long. We were in and out within 10 minutes. I got told to follow up with our local speech therapist to discuss feeding and bottle types.

The appointment following the 6 week check up had us back at square one, being dismissed by doctors with the reasoning being that my baby is putting on weight and puree is acceptable for 7.5 month olds. When we believe our baby was clearly ready for more but we were advised to wait for the go ahead by doctors.

Ever since the surgery my baby has had complications with eating food and drinking bottles, to the point they are choking and vomiting on purée food. Even now at 13 months old they cannot consume anything thicker than puree without gagging/choking.

I feel I have exhausted all avenues as it doesn’t seem to make a difference who I address my concerns to, no one listens or takes it further

I am having issues getting in contact with the Speech therapist from Hudson Road clinic, this has been ongoing for just shy of 3 months. I’ve sent multiple emails and made many calls with no response. My mental health is suffering feelings of guilt and neglect as I have been unsuccessful in helping my baby despite my efforts and multiple attempts with different health professionals.