Myocarditis awareness post❤️
On the 1st of February I started realise that Amelia was becoming unwell she was being sick and was very tired I thought she had a sickness bug and I let her rest for the day. She had slept the whole of the Saturday I thought she would wake up Sunday a little bit more herself but she didn’t, she slept the whole of that day as well.
When she eventually woke up around 4pm I noticed that her eyes had swelled up I didn’t really know what to think and called my mum she advised me to call 111 as she didn’t know what it could be I called them around 5pm and they told me a doctor would ring back within an hour. A doctor eventually rang me back as she advised me to take her to a&e within the hour.
I got myself and Amelia ready and we headed straight up there, after seeing triage we was taken straight through to see a doctor and Amelia was given 2 sets of antihistamines as they was worried she had had an allergic reaction I told them that she hasn’t eaten anything or really drank for the past 2 days and I didn’t think it was that but they gave them anyway and we was left for a few hours before seeing another doctor. The doctor came round and we went through everything that had happened the last couple of days and she reassured us that Amelia would have just been suffering from a viral infection and she would get better within a few days but they wanted to keep her in over night in the acute short stay unit just to keep an eye on her swollen eyes and they wanted to check her urine.
So after sleeplessness night trying to catch a urine sample we finally managed to get a small one at 8am the next morning so that was more then 12 hours without a wee. They came round and told me everything seemed clear and I needed to encourage her to stay awake and get up and play, my lifeless little girl could barley keep her eyes open there was no way she was going to get up and play but throughout the day I did take her over to the small play area they had but she just wanted to sleep.
Hours had past and they still wasn’t sure what was going on with her so they decided to do some blood tests which came back normal apart from one level which was high and when a different doctor came round she explained that it was high because of her fluid intake I had told her that she hadn’t been drinking but she was dead set that she had come Ill because she was drinking to much and she wasn’t getting enough nutrients, she said she was going to prescribe some vitamins and print me off a information pack of the right foods to give and she could come home.
I wasn’t happy about this at all and a few hours later another doctor came round I asked her how long Amelia was going to be like this and she said she would start getting better within 7-10 days once the virus had run it’s course. Hours had passed and I had no clue what was going on with her and her eyes were becoming more swollen and she was still so sleepy and very hard to wake up I decided to go home and get a change of clothes and Amelia stayed with her dad.
When I got back her dad told me another doctor had been round and she wanted to take Amelia for a chest X-ray to see if they could see anything so around 11pm we was taken round to have it done then we was taken back to the short stay and was left there until 2.30am when the doctor who had suggest the X-ray came around the told me that Amelia’s heart was inflamed and she was dehydrated, they started her on a drip straight away and we was taken up the the high dependency unit.
Her heart rate was sky high and she was like a rag doll. First thing the next morning we was taken down to the cardiac ward where they did a echo to see Amelia heart properly and that is when we was told Amelia had myocarditis! Myocarditis is Myocarditis is a rare, sometimes fatal disease charac- terized by inflammation of the heart muscle.
The dis- ease can affect the muscle cells of the heart (myocytes), the heart valves and blood vessels, and the specialized electrical conduction pathways within the heart. When the muscle cells of the heart weaken from myocarditis, the heart chambers may enlarge. This form of heart disease is called dilated cardiomyopathy. Children with dilated cardiomyopathy may develop symptoms of heart failure, sometimes necessitating a heart transplant. Heart failure resulting from myocarditis-induced dilated cardiomyopathy is a significant cause of disability and death in children.
We had a few cardiac doctors come round to see us and they was absolutely amazing with diagnosing what was actually wrong with her, the swelling around Amelia eyes was her heart failing and the fluid was leaking out of her body causing her eyes, hands and feet to swell and they wasn’t 100% sure the fluid wouldn’t go to her brain so she was watched very closely for the next 24 hours.
She is now recovering and after 11 days in hospital and numerous bloods tests and echos we was allowed to come home with lots of medicine and hospital appointments. She’s on capapril which is supporting her heart function and hopefully in time her heart function will go back to normal. I would never liked to criticise the nhs as they did an incredible job making Amelia better but there is so much more a&e could of done by recognising this sooner as Amelia’s heart could of stopped had she been left any longer. People should be more aware of this condition as it could save lives we have been extremely lucky and I’m forever grateful! But please always go with your gut when it comes to your children because I believe parents always know best!❤️