I just feel beaten. Defeated. Deflated. My baby has had ongoing health issues since she was 3 weeks old. Failure to thrive, GORD, malabsortion. 3 weeks at Children’s hospital. She showed slight improvement and we were sent home with regular follow ups. The follow ups feel useless, she would gain 100 grams in two weeks and they were happy with it. She vomits so much that blood comes out. “It’s normal”. She had a fever and some breathing issues so took her to childrens hosp, they said probably covid, sent us home. Covid negative, fever still persistent so we went back, urine test showed infection, gave antibiotics and sent home. Two days later got a call from hosp- infection is bacterial come back because it’s bad. 4 days at hosp as it turned to kidney infection and sepsis. Had seizures, febrile convulsions- she’s fine. Sent us home. Constantly sick like every two weeks. Just took her to hospital as she had 3 convulsions, temp that won’t go down, lethargy, shaking body- she looks fine here’s some antibiotics go home. She has always been a happy baby, even when she lost SO much weight as a new born and when she had sepsis she acted happy so no one takes it seriously. I feel like a failure of a mum, a nag to the health system and I just feel defeated. I’m scared that this fatigue is going to make me miss something and my daughter will end up something serious. No one (dr’s) care. They take one look an oh she smiled she’s fine go home. Why don’t they listen? She’s now 8 months, she’s tiny. In 2 months she’s gained 350 grams. She’s missing her milestones. I feel something isn’t right. But what else can I do? I feel like nothing else can be done but wait for her to be so extremely sick she will be in ICU. I am traumatised from having such an incredibly sick baby. I’m just defeated. Like what’s the point anymore.
5 Replies
That is terrible. Next time anything happens, call 000 and maybe going by ambulance will make them change their views. You are An amazing mum doing all the right things. Listen to your gut and stand your ground. Mums gut instinct knows best. Take her to a different Dr time. Go to your Dr and ask for a referral for a paediatrician. Don’t stop you know your baby and your instinct.
Have you a paediatrician that you can follow up with? So you have one person managing your lil ones card?
Try to take some time for self care!
You sound like an amazing mum! Is she seeing a dietitian for the weight issue? If not, get a referral. They will will monitor her weight and height, and will advise you of what to add to her EBM or formula to get weight on her. If she is vomiting blood, demand an upper endoscopy (camera down the throat) to see what’s happening in her oesophagus and stomach. There could be damage as a result of the vomiting. She could have an allergy or intolerance that is causing the vomiting, this *might* show on the oesophagus. Request a chest X-ray if you suspect she may be aspirating when vomiting (vomit trickling back into her lungs). If you attend emergency with her and they try to fob you off, request Ryan’s Rule (or whatever the equivalent is for your state). An independent team will assess her to ensure she has received the correct treatment before you leave. Do you have a good GP? Book a longer appointment and explain everything that has been going on. They may be able to organise some tests. Or can you afford a private paediatrician? If you can, get a referral. It’s probably also worth getting a mental health care plan for yourself, so you can see a psychologist who can help you deal with the stress of what’s going on.
My 15 year old son has a physical disability, as well as invisible medical issues, that unless you know him and his history you wouldn’t know there was more going on. He sees multiple specialists and allied health professionals at Qld children’s hospital, and has been since he was a baby back when the Royal children’s hospital was open. We’ve been very lucky that there have only been two doctors that haven’t trusted my instincts as a mother.
Keep demanding answers! Maybe some tests will be a waste of time, but it’s better to rule things out than to have damage caused because something wasn’t considered when symptoms started.
There's something in QLD called Ryan's Rule (and I believe there are equivalents in most Australian states if you don't happen to be in QLD). If you feel unheard by medical staff in hospital, like they need to look further, like you want a second opinion, a review, someone else to look into the situation, you can invoke the rule and they must help by getting someone else onto it.
https://www.kidspot.com.au/lifestyle/family-health/you-have-the-right-to...
In VIC I believe it's called a care call