“Watching the little purple oxygen line appear on her monitor was pure joy.”
“My daughter Esther was born by emergency caesarean at 36 weeks and was in the NICU at first so she could be given antibiotics.
“A few days later Esther had a blocked nose but we were sent home from the hospital. The doctors assured us that the antibiotics would still be in her system, so it was unlikely to be anything but a cold.
“One morning I woke up and Esther had slept through the night. I thought it was unusual for a new-born but my partner said, “the doctors have told us she’s okay.”
“Deep down I knew something wasn’t right. As the day went on, I noticed Esther didn’t have any wet nappies and she couldn’t pass stools. She didn’t want to take her bottles.
“I called my partner to explain I was worried. He again said she had a cold and was just constipated.
Refused milk
“I thought I would take her for a walk and that would wake her up a bit. After a short walk I took her home for a bottle and a nappy change. She refused the bottle. We couldn’t wake her up and her nappy was dry.
“I called my local midwife and she told me to call 999. A sick feeling came across me like a ton of bricks. I called my partner to let him know.
“We were rushed back to our local hospital and were put in a side room. Esther was hooked up to an observation machine. The alarm went off a few times signalling that her heart rate and oxygen levels were low.
“The nurses just said it was because she was kicking the monitor off. I just stared at them because she wasn’t moving - she was almost lifeless at points. I asked them to please check the machine and then they saw how low her statistics were!
Infection
“They then rushed to do tests. We were told they thought one of her valves of her heart wasn’t working properly and she needed a scan. An hour later I was told it was an infection of some kind but they couldn’t tell what.
“We were taken from the children’s A&E to a ward. Esther was put on oxygen and has an EG tube fitted. She also had a cannula put in for fluids and antibiotics.
“I noticed that when Esther’s stats were dropping she was also not breathing properly. She was put on a CPAP machine but that still wasn’t helping her.
“A specialist doctor came and saw her and, after a few X-rays and scans, I was told my daughter needed to be taken into theatre to be put on a ventilator as she can’t breathe for herself anymore.
Transferred
“We had to wait outside the theatre room. A NICU doctor come to explain to me that Esther needed to be transferred to a different hospital as they didn’t have the room for Esther in the NICU, nor could they risk other children.
“While we waited for the PANDR team to come and collect us it felt like time was flying by while I was stuck barely moving.
“By the early hours of Saturday morning I was told they suspected a bleed on the brain and that Esther needed a CT scan but they would do that in the specialist hospital.
“Esther was finally stabilised on the new ventilator and we went to the specialist hospital in Cambridge. My partner was at home working out childcare for our two-year-old so he could be with me.
“Being alone somehow made it easier to deal with everything. At Addenbrooks we were put on the PICU ward and we were still not sure what was wrong with Esther. All the doctors and nurses were brilliant, which made things easier in the worst of times.
Lumbar puncture
“On Sunday afternoon we met a new doctor who asked if she could perform a lumbar puncture to see if it was a bleed on the brain. She said she would be able to tell by the spinal fluid if there was blood or an infection. Of course, we agreed.
“Time went on while we watched our baby lying sedated attached to the machine which was keeping her alive! The whole time I was thinking back to being sent home from hospital in the first place, and how this could all have been prevented.
“On Wednesday morning Esther tried to breathe by herself which was the best feeling ever! Watching the little purple oxygen line appear on her monitor was pure joy.
“That afternoon we had a meeting with one of her consultants explaining some results that had come back. They told us that Esther had contracted an enterovirus which had turned into viral meningitis.
Meningitis
“I felt numb hearing the word ‘meningitis’. They explained that she was doing well and they believed she would be okay.
“We had meetings with neurologists and Esther had to have more tests to check her brain wasn’t affected. A day later Esther was taken off the ventilator and put on a CPAP machine as she was breathing all on her own!
“The next day her tube was removed. Our baby was finally awake again and I was able to hold her. The fear of loosing my baby vanished as soon as she was in my arms.
“Esther was on a high dependency ward instead of an ICU and she was still having some apneas but she was able to bring herself back out of them.
Little steps
“These little steps were everything to us. After EEGs, scans and monitoring we allowed to go back to our local hospital. I was so pleased to know we were getting close to going home but I was also nervous about going back to the hospital where my concerns had been ignored about Esther’s health. The only comfort were the two amazing nurses there, Nic and Bee, who looked after us so well.
“Back at the local hospital Esther pulled out her feeding tube so they allowed her to keep it out and try bottle feeding, which she took to well. The next day we got the all clear to go home!
“The doctors explained that Esther will need regular checks to keep an eye on her development and she’ll have meetings with a neurologist.
“Esther ended back in hospital in May with suspected meningitis again! It turned out to be sepsis and an enterovirus but the fear of it turning into meningitis again was absolutely terrifying.
“We have been supported so amazingly by so many people – the doctors and nurses, the Sick Children’s Trust who housed us so we could be with Esther throughout her ordeal, and our family who have fed us, supported us mentally and looked after our eldest daughter. We feel very fortunate that, at such an awful time, we had invaluable help.
“We are now at home again enjoying our baby as a family and are just waiting for tests along the way. Her development is slower than normal but not far behind. Esther is growing into a lovely, happy little girl.”
