Amanda, from Liverpool, recounts their story here.
“After a very long and hard labour, Maisie was born with no obvious symptoms. She had her check over by the doctors and we were ready to be discharged, only with Maisie being our first child we had to be shown how to bath her and there was no one free to do this till the following morning.
“That saved my daughter’s life!
“I was having difficulty feeding Maisie and getting her to latch on, which isn't unusual in newborns. The midwife had taken Maisie off me and said ‘have a rest, I will give her a little cup feed for you’.
“She did this sitting in the chair next to my bed and within seconds Maisie had vomited everywhere and the midwife said she would take her and clean her up. I thought this was a bit strange because it could have been done in the room, but unknown to me, she had done a jaundice test on her forehead and it was dangerously high.
“She brought her back and within minutes a doctor came and said they would do some routine tests, because she's a bit too jaundiced (which I didn't think was too serious at the time). Every baby at some point gets a little jaundiced I thought to myself.
“This was around 4pm. She still wasn't back by 6pm for visiting, so around 7pm Maisie's dad and I went round to see her. They said she's okay; we’re just doing tests and keeping her there for a bit longer. So, 8pm came around and it was time to say ‘bye’ to her visitors and her dad said goodnight.
Get some rest
“The midwife said ‘get some rest and have a sleep and you can go to the neo unit in 24 hours’. I got into bed but I couldn’t sleep, so by 8.40pm I was out of bed and back round the neo unit to see my Maisie
“When I got there, there were neo nurses and doctors all around Maisie's incubator, transferring her into room 6 (the room no one wants their babies in). As they wheeled her out I noticed she was almost purple in colour, with white/yellow blotches all over her.
“They told me to wait in the parents’ room. At 11pm someone came in and said Maisie was really poorly, they didn't know what it was but they have put her in an induced coma and she was on a ventilator and really strong antibiotics, the sort they would use if it was meningitis.
“They had done a series of tests, including a lumbar puncture (she went on to have 12 of these), but it wasn't until the following morning that the consultants came in and said she was critical. Maisie was the sickest child in the hospital, but they didn't know what they were dealing with until her results were back.
“Maisie was having fits, so they had her on fit medications. Then we were told it was a rare form of meningitis (ecoli and sepsis). Our strong little girl was getting better and was kicking meningitis’s butt!
The best feeling ever
“She was allowed in to room 5 after 10 days in room 6. This was the best feeling ever - our girl was getting better.
“After three days I noticed Maisie wasn't herself. Her consultant did some more tests and her CRP levels had risen back up. The panic began to take over again. An ultrasound was carried out on her fontanelle and he told us she needed an MRI/CT scan. As they didn't have the facilities in the women's hospital Maisie would have to be transferred to Alder Hey by ambulance in her little incubator.
“We had to get to the hospital as well. We got there about 8pm and there was a neurosurgeon waiting for us. Maisie was having her scans and they took us into the room and showed us them. You could see around the meninges, a build-up that needed removing as soon as possible.
“My two-week-old baby needed brain surgery. They prepared her for surgery and told me they were putting a Broviac line in, which is used in long-term illnesses, because it would be better than the previous lines and longlines she had had and easier to do if it was done at the same time as the big operation.
Couldn’t believe the difference
“The operation itself should take around an hour an a half. Four hours later we got our baby back and she was like a different child - smiling away, kicking her legs, feeding. I couldn't believe the difference in her straight away coming around from theatre. They had made four incisions into Maisie's skull and removed what they could to relieve the pressure on her brain. She would need IV antibiotics to clear the rest.
“This was Maisie's first night of nearly a three-month stay at the neurosurgical unit at Alder Hey. She was getting better every day. She had scan after scan and they did all sorts of other tests on her. They checked her heart, which had a small hole in it. But that's fine and healed itself.
“She also had grade 2 kidney reflux, which she is still on antibiotics for because she suffers with water infections. But, at the moment, that seems to be the only effect that this terrible illness has had on my baby girl.
“I consider my family a very lucky one and my Maisie is one amazing and strong little girl.”
