Our Baby With Brugada

Our Story........

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, Anemia, E coli and an Urinary infection.

Preeclampsia is a pregnancy complication characterized by high blood pressure and signs of damage to another organ system, most often the liver and kidneys.

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 diarrhea 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.

The Day Our Lives Changed Forever.....

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 Pediatric 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.

We were devastated but hopeful of getting some of our little girl back. After 5 weeks at Cardiff we were 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 subcutaneous 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.

Ellie has began recovery well, and is showing neurologically that she hasn’t been dramatically affected by the brain damage. She is speaking as normal and every day her movement is progressing. She can now sit up and roll over and it wont be long before she re gains the ability to crawl as there is nothing holding our little fighter back.

Rachel & Matthew

Parents of Ellie Rose Harris