Our little fighter

Ellie was 14 months old and had no previous medical conditions. She was born on the 3rd December 2017 (7 weeks early) due to myself (Mum) having been diagnosed with Preeclampsia, Anaemia, E coli and an Urinary infection.

We spent Christmas and the new year in hospital and were discharged 4 weeks later. As soon as Ellie was home, she lived the life of a healthy, cheeky little girl. She was ahead of all her milestones and by one years old we were told by her consultant that her speech was equivalent to that of a two-year-old. Me and Dad were both relieved that her early start in life hadn’t affected her in any way and we were so proud of how funny, beautiful and very intelligent she had become.

Then Everything turned South.....

Ellie caught a normal winter bug at the beginning of February 2019. Her symptoms consisted mainly of a high temperature and diarrhoea with occasional sickness. Although she was poorly, she was happy and playing as usual and we treated her with Calpol every 4 hours.

On the 9th February I noticed Ellie felt a lot warmer than usual so I checked her temperature which was reading 37.6. Our ear thermometer hadn’t always been that accurate so we gave her calpol as a precaution and I sent Dad out to buy a non touch digital thermometer. When we re tested her it has risen to 37.8 and we both began to worry. We phoned out of hours GP and took her to Nevil Hall Hospital in Abergavenny to see the Doctor. He checked all the usual observations, her temperature was down to 36.6, her chest sounded normal however her blood sugars were slightly high but he said he wasn’t concerned and sent us on our way. Later that night I checked her temperature again and it was still reading extremely high and she didn’t seem completely herself so Dad phoned the Emergency Paramedics out to assess her. The Paramedic that came again checked all the routine observations which all looked ok and after an hour he left with no concern.

On the 10th February 2019 Ellie was just get ready to go to bed. She cuddled in with a bottle and began drifting off until Her aunty came in from work. Ellie was excited to see her and climbed down off my lap to play. Everything was normal... Ellie was shouting and laughing and crawling around. Her aunt grabbed the bubbles from the shelf which Ellie mistook for the Calpol bottle which she hates and she started to cry. Her Aunt lifted her up and hugged her to sooth her. I looked up and all of a sudden Ellie's head flopped back. “Theres something wrong I screamed, she’s not breathing.”Nan lept up off the sofa, laid Ellie on the floor and began CPR while I phoned the ambulance. She managed to resuscitate Ellie twice before the Ambulance arrived thanks to the Pediatric CPR training she strangely only received a week prior. The Welsh Air Ambulance Doctors arrived via road and sedated Ellie in the back of the Ambulance putting two IO’s in through the bone in order to get the medication in quickly. They saved her life.

But it Didn’t stop there....

We were rushed to the Paediatric Intensive unit at Noah's Ark Children’s Hospital in Cardiff where within 30 minutes of admission Ellie suffered another Cardiac Arrest. The doctor came in to the waiting room and told us “they are currently doing CPR on Ellie, It’s not looking good”. We decided we wanted to be with her and sat praying while we watched the Doctors perform CPR for 15 minutes. 5 shocks were then given and finally her heart went back into a safe rhythm. They had saved her life again.

She remained stable for a few days under paralysis and sedation with Doctors Puzzling over what the cause could be. All her tests came back normal and they began sending daily ECG’s to the heart specialists at Bristol Children's Hospital. The Doctors were all puzzled, in their 20 +years of experience they had never encountered this type of case.

They followed the normal tests up with a MRI and that’s when the BOMB hit us. They took us to a private room and explained due to the starvation of oxygen her brain had encountered during the 15 minutes of CPR she had severe damage to both sides of the brain. They did stress they didn’t know how this was going to affect her and only time would tell of her ability to move, talk, see, hear etc.

I remember the fear that was building inside me. I thanked the Doctors for having the strength for telling us. It must have been so hard for them. I then panicked at the thought of telling other family members who were waiting outside.

We were devastated but hopeful of getting some of our little girl back. We lived a hard 5 weeks at Cardiff hospital, every day wondering if she was going to get through it. It was so difficult seeing my beautiful and very active child go back to a new born state. We were then transferred to Bristol Children's Hospital for testing. It came back Positive for Brugada syndrome, a rare heart condition and even more rare in children especially babies.

On the 25th March Ellie underwent surgery and had an epicardial pace maker with a subcontaneous coil fitted (ICD) in her chest. There are no known cures for Brugada and this is the only treatment available. It is still very new and under experimentation but we want to spread the awareness of this condition.

After our 4 months in hospital, we brought her home. It was difficult adjusting to new life with the many worries and fears that we had. I was able to get the hang of medication both day and night and regular temperature and fluid monitoring. But, it was also a very uncertain time from a mental health prospective. I had been diagnosed with PTSD just a year prior to Ellies Cardiac arrest. This was due to the trauma I experienced in hospital after having Ellie. I had been unwell with mental health for several long weeks, unable to move off the sofa, barely eating and sleeping most of the time. With strength and help from family and a fantastic councillor I was able to recover. Without this new strength I wouldn’t have been able to cope with the reality of Ellie being in a critical condition just several months later. I had learnt panic coping techniques and was able to stay strong for both of us. I prayed most days and held on to every ounce of good in this world, that she would make it.

She is now 2 years old and astonishing Doctors due to her quick recovery. Often I’m told ‘I can’t believe the Ellie that is Infront of me, is the same that’s on this paperwork.’ I am so proud of her. She has relearnt how to hold her head up, sit, talk, walk and eat. Its hard to think she was given less than 1% chance of surviving, and now you wouldn’t notice a difference to any other toddler apart from the scars on her chest. I will always be grateful for the whole medical teams, my guardian angels and the family and friends that carried us the whole journey.

There is nothing stopping our little fighter…