Alice M's story

7th December 2018

When Jennifer put her baby to bed she was a healthy new-born. But when Alice woke in the night there was obviously something very wrong with her. Jennifer, from Sudbury in Suffolk, tells us her terrifying story

Alice H meningitis Group B strep case study

“We went to bed a normal, happy family with the beautiful family picture you have for the future, filling us with content before we closed our eyes ready for a new day (or until the next bottle feed for our beautiful 5 week old girl). But she never woke."

“Luckily we had set alarms for feeding time and my partner woke me with her, telling me, “Something doesn’t seem right, she’s not interested in food and she’s just staring”. I took her and checked her over. She just had this frozen look on her face and her eyes seemed like she was seeing through me."

“I pinched her ear lobe with my nail to see if she reacted to pain and got no reaction. Just her face, frozen in fear. I then watched her breathing because she’d started pausing between breaths. Her skin started going blotchy and she was looking grey. I felt her arms and legs and they were so cold. All of this happened within minutes but it seemed to have gone in slow motion."

“I phoned 999 and they got here within 20 minutes. They checked her over, no temperature, no rash, no crying. We just knew she wasn’t right, so they took us to hospital."

Alarms

“We arranged for my eldest daughter Anna to be picked up and looked after (it was the first day of the summer holidays) and I went in the ambulance while my partner followed. In the ambulance I explained that I am Group B strep positive (a bacteria that is harmless until pregnancy / labour / birth) and that I was worried she was infected with late on-set GBS infection. Then alarms started going on the machines and my eyes were streaming with tears before I could even compute what was going on. She had stopped breathing."

“One paramedic had to perform a jaw thrust on her and the other had to ‘bag her’ to breathe for her. She started breathing again on her own but it didn’t last long before she stopped again. Now it was me who was frozen in fear."

“We got to the hospital and were greeted by about 15 incredible members of staff that had been waiting for our arrival. They carried her straight in, in their arms, and I followed. I sat and watched them try to intubate her and get her hooked up to so many drips and wires. A wonderful woman stood with me and explained everything that they were doing and pointed out who was who and what they do. Finally, Nick showed up and we broke down together. It was so hard not knowing what was happening to our beautiful baby and why."

“Eventually we were told that she needed to be in a paediatric intensive care on life support in a specialist hospital and that we were going to be transferred to either Great Ormond Street or Addenbrookes."

Fought for her life

“The CATS (Childrens Actute Transport Service) team showed up and spent two hours hooking so many things up. She had ten different drips, ventilator, an arterial line in her groin to measure her blood pressure and various other wires that they so carefully hooked to their transport incubator, and off we went to Addenbrookes."

“Once we got there, they then spent another two hours transferring all machines and wires and medication to the PICU bed for her, all the while making sure they didn’t disrupt any of it from working."

“We were introduced to Abi, who manages Acorn House (a home from home run by an amazing charity, The Sick Childrens Trust) and given a room so we could be close to our beautiful girl as she fought for her life."

“I couldn’t tell you what day it was as time didn’t seem to matter anymore, but we got told that she had meningitis and sepsis caused by late on-set Group B Strep infection."

“I hated myself, she was here because of me and there is nothing that can be done to prevent it. I had antibiotics all through labour and she had them for 48hrs afterwards to prevent early on-set infection but sadly, there is yet to be a vaccination for late on-set. She was 1 in 2000 babies to get it. And 1 in 10 will die from this awful deadly infection."

“We waited a few more days for the results from her MRI scan. Our family waited while we were taken into a room for the results."

Our hearts shattered

“We were shown pictures of her brain and told that her brain had been severely damaged. Healthy tissue shows white and all we could see was dark patches and grey. Our hearts shattered. The doctors spoke about everything the brain controls, from breathing, hearing, seeing, movement... everything the body does. So they prepared us for the worst and that she may not be able to breathe on her own, let alone anything else. We left and broke down to our family members who were waiting for us."

“After that, we just took each day as it hit us. And slowly we saw her condition improve. We said goodnight to her each evening and waited for what the next day would bring. Eventually, she started breathing on her own and was taken off the ventilator and we were FINALLY allowed to hold her. She had tremors and still had IV drips and a tube but she was awake, our little Alice was finally in our arms."

“She went from strength to strength and eventually was discharged back to our local hospital on their paediatrics unit to complete antibiotics until the infection was clear. She had so many cannulas fail that she ended up having them in her feet and head. Only one of us could stay the night so it was three long weeks of journeying back and forth and being without each other, but Nick and I made it work. We also got to spend time with Anna, who we had been away from for almost two weeks while Alice was in Addenbrookes."

Strong little girl

“Finally, we were discharged and came back home but this was just the beginning. We have so many appointments and are still unsure of her future needs as she is still so young. Her development is slow but steady, she has lost hearing in one side and we are still unsure of her sight. She does not yet smile or babble but her eyes light up when she is happy and she tries to babble whilst batting at us with joy."

“She is an amazingly strong little girl and we are forever thankful for all the amazing people that saved her. We might not know what our future family picture is now, but we know that we are so incredibly lucky to even have a picture at all."

“She amazes us everyday, just like her big sister. We go to bed like a normal, happy family, filled with content and close our eyes ready for a new day. A new day we are so incredibly lucky to have with our baby girl, Alice.“