Looking back Emma says she looked frightened. Elena was rushed to hospital where the prognosis was not good, but defying all the odds she has gone on to reach her milestones. Emma, from Preston in Lancashire, tells their story here.
“On 22 September 2015 I gave birth to a beautiful baby girl, Elena Rose. Elena was our third child and all seemed well, though shortly after she was born we were told I tested positive for Group B Strep.
“We didn't know much about GBS and hadn’t heard much about it but we asked would she be okay? They told me she seemed fine so not to worry.
“The following day we went home. We raised a few concerns over the following days as mainly when Elena cried she had a harsh grunting noise in between her breaths, but this was brushed off as mucus on her chest.
Didn’t know the severity
“One midwife who visited reminded us that I had had GBS and to watch out if she stopped feeding etc. Luckily this stayed with me, even though I still did not know the severity of what it could mean.
“Two days later when Elena was just nine days old she had a bottle at 7.30am and seemed fine, lying on her mat and watching her brother and sister playing. By 9am she was fussing, so I fed her again. This time she projectile vomited, followed by a screaming/crying episode which, looking back now, was not normal. When I think about it now she looked frightened, it was in her eyes.
“She then slept with little groans here and there. I presumed she was tired, but I called a midwife anyway for advice who told me to give it a few hours and try again with a feed. A few hours passed and she wasn't interested in feeding and my husband said she felt hot. I took her temperature and she was hot – and that's when I got a dreadful feeling something was wrong.
Calling for an ambulance
“My husband Ian stayed with our other two children Mason and Bella while I took her to the doctor, who took one look at her and said he didn't want to panic me but he was calling for an ambulance.
“At this point Elena kept having startles and a glazed vacant stare, a look I'll never forget.
“We got to the hospital and she was straight into resus with a team of doctors and nurses waiting for her and starting to work on her. By this point Elena was vomiting green bile.
“My husband then walked through the door and we spent the next three weeks in hospital. The first three days there were alarms going off and it was very touch and go. Elena suffered well over 15 seizures, countless IVs, a lumbar puncture, x-rays and lots of medications.
“Elena would moan out in pain as the fan that had to be on her to cool her down was hurting her. We couldn't touch her for the first three days as it caused her too much pain and discomfort.
“Elena then had a brain scan as they were struggling to control the seizures. We were taken into a room to be told that it was not good news and Elena's brain looked very damaged. At that point they said she may not make it through the night but if she does make it she is going to be severely disabled. She had widespread brain damage to all areas.
“Despite all this after that horrendous night things started to improve and we could see she was getting better and she stopped seizing.
Continued to defy the odds
“She has continued to defy all the odds ever since and is now a very healthy, active and sociable two-and-a-half-year-old. She has reached all her milestones along the way from smiling, laughing, crawling, walking and now talking.
“Elena loves to dance and sing and she attends nursery two mornings a week which she loves.
“She has been diagnosed with right side hemparasis (mild cp), squint (lazy eye) and microcephaly (small head). Elena is still reviewed by physio and occupational therapy, orthotics, eye specialist and has two pediatric consultants. We also found our own expert in child development and neurology Andrew Brereton at Snowdrop for brain injured children, who has helped by giving us therapy programmes that we've done at home with Elena.
“Elena has been seizure free since her hospital stay and free from seizure meds since she was 12-months-old. We are so lucky Elena is still alive and has done as well as she has. I really hope that her story will give hope to those going through a similar ordeal.
Group B Strep should be talked about more
“Group B Strep can be prevented with a simple test that you can pay a small amount for yourself. If only I had known. It really should be talked about more.
“I first heard about Meningitis Now in hospital, since when they have supported me through the helpline, home visits, a Family Day and the website. I don't know what I would have done without Meningitis Now, especially in those early days. Their support really helped me through a dark time, thank you.
“We have been very lucky that Elena has no major life-changing disabilities and especially that she is still here, I'm more of an anxious person now still watching her very closely. However, we are extremely lucky.