Isabella's story

19th January 2016

Donna’s daughter Isabella didn’t have the easiest start in life, contracting Group B Strep

Isabella letterbox
But that was just the start of the family’s difficulties.

Donna recounts their story.

“Isabella was born on 17 July 2013, during a heatwave. During delivery she had apparently swallowed quite a bit of meconium, so they wanted to keep her in for 12 hours under observation as standard practice, so we stayed the night. She cried all night."

“All the other mothers on the ward were getting fed up of hearing my baby and I felt like the most useless mother ever being unable to settle her. One of the night duty nurses even tried walking her round the ward in a pram to calm her down, but nothing worked."

“Deep down I knew something wasn't right - I just couldn't put my finger on it. Of course, despite being checked over several times, no one picked up that there was anything wrong. I was just a new mum who was overly apprehensive, tired and stressed and the baby must be picking up on it."

Taken for further checks

“It was actually a junior doctor who did her pre-discharge checks who wasn't entirely happy with her rapid breathing and took her away for further checks. After an hour or so a doctor came back to tell me they were undertaking a lumbar puncture … my heart stopped."

“They started her on antibiotics straight away whilst they grew cultures from her lumbar puncture to see which antibiotics were best suited to the type of meningitis she had."

“They then tested me and confirmed I had tested positive for Group B Strep. Oh my god! I didn't know much about Group B Strep at the time and I felt immediately disgusted with myself. Where had I contracted it from? Why didn't I know? I had poisoned my own baby and her life was on the line. This was my fault! I was so ashamed."

“I also didn't know much about meningitis at the time, other than it could be fatal. Even if she survived, it was unlikely she would come through it unscathed, maybe losing limbs, hearing, sight, brain damage."

Looking for a ray of hope

“I did a lot of googling that night trying to find a ray of hope and comparing statistics on hundreds of different websites, despite the nurses urging me not to."

“We decided that night to name her Isabella. Isabel was one of the names we had already shortlisted but Isabella was a character from The Twilight Saga, and she was immortal. As daft as it sounds It gave me a tiny bit of hope that this was a strong name and meant she was a fighter."

“She went through hell that week. My tiny baby girl had to be fed through a tube down her throat, had long lines inserted through her arms and chest which kept blocking up and needed removing and reinserting. I could hear her crying in pain down the corridor. I couldn't feed her. I couldn't hold her. I was a mess."

“My almost 3-year-old son contracted chickenpox at the same time and was unable to come into the hospital or come into contact with me or his new sister, as I was staying at the hospital at my daughter’s bedside. As a result, he refused to have anything to do with me. It was heartbreaking."

We held her and cried

“Then, after about a week she started responding positively to the latest set of drugs. It was a ray of hope and such a relief. We were able to hold her. Both my husband and I held her and cried."

“Another week later and the tube was out and I was able to try breastfeeding her. I've never felt so much relief in all my life. After a total of 15 days in ICU, we were able to take her home."

“Unfortunately that's not where the story ends."

“A couple of months later Isabella's head looked to be swollen. It was my mother that commented on it. It was hard for me to see, as I only saw how beautiful my baby was. It was only when looking back at photos of her over the last few months that it really showed up. How could I not have seen it?"

“I took her to the doctor who told me "someone's child has to have the biggest head in the world!" She measured it and said she couldn't see what I was worried about. She was acting normally and had no other signs or symptoms. Again, it was suggested that I was an overprotective mother. Stupidly I took that diagnosis and went home slightly happier."

Had a seizure

“Three months later Isabella had a seizure which lasted almost an hour. She was taken to hospital in an ambulance where a CT scan showed brain bleeds, so she was rushed to another nearby hospital for an emergency operation. A full craniotomy was undertaken."

“Apparently (we received the diagnosis a week later!) the meningitis had caused her brain to shrink and fluid to build up in her skull around the crevices of the brain. She had a condition called BESS, Benign Enlargement of Subarachnoid Spaces. This meant that the blood vessels connecting the skull to the brain were randomly snapping under pressure and causing blood clots to build up on the brain."

“To make matters all the more traumatic, due to the nature of the 'injury', Social Services decided to get involved, legally ‘kidnapping’ with police back-up my 3-year-old son in the middle of the night, banning my husband from seeing his baby daughter in hospital and keeping me under constant surveillance in the ICU."

“My daughter’s life hung in the balance once more, my son had been taken and we were effectively being accused of child abuse. I couldn't even believe it! It was every parent’s worst nightmare. How could this be happening to us? Innocent people don't get punished I kept telling myself over and over again. Yet, the reality was the exact opposite."

Happy, healthy family

“To cut a long story short, Social Services were taken to Court and lost their first ever case. Our son was returned to us, albeit extremely traumatised, and our daughter pulled through her operation and was put on daily anti-seizure meds for the following nine months."

“Fast forward 12 months and we are now a happy healthy family, and doctors assure me that Isabella should 'grow out' of her condition by the age of 3-4. So far, we have found no residual side effects from either of her illnesses. She is a little warrior princess who has exceeded even doctors expectations."

“Despite everything, I can't help feeling we were lucky. Strangely enough about a month before my due date I attended a Meningitis Trust event at St James’s Palace with my husband's company and made a donation. Maybe that is what they call Karma?"

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