Meningitis in your words

Cross Family's story

  • Location: England
  • Categories: Bacterial meningitis
  • Age: Toddler 1-3
  • Relationship: Child
  • Outcome: Recovery with after effects
  • After effects: Amputations
Cross Family

October 2003 was the start of our lives altering forever.

Our youngest daughter Millie, who was nearly eight months old, became ill. I didn't like the look or sound of her breathing, it was very laboured. She'd also had a temperature and been sick. I took her to the doctor's surgery, where they told me not to worry. 

But two hours later I was ringing the surgery again, crying, saying: "There's something wrong with my baby."

I took her back where a nurse saw us straight away. She rang for an ambulance and demanded a doctor to see us immediately. Millie was boiling hot but her hands and feet were freezing.

She was injected in the leg with penicillin by the doctor, who told the ambulance drivers: "Get us to hospital as quick as possible".

We were blue-lighted there, which took 40 minutes, and Millie was given oxygen. On arrival, I placed her on a bed where eight doctors started to examine her. Lots of questions. 

Nobody had mentioned how poorly she was until another two hours later when a doctor mentioned septicaemia. But they couldn't find a paediatric intensive care unit with a spare bed for her. I can remember the main doctor looking after her going mad on the phone trying to get her in somewhere.

It took another five hours for the retrieval team to arrive and another three hours to get Millie stabilised for the one-hour journey to the PICU.

We were allowed to go in to kiss her but told to be quick. She had got so swollen and was wrapped in bubble wrap.

In the PICU, we were told the next 48 hours were critical. By the next day she had multi-organ failure and was on a life support machine. So many machines, so many wires over her little, but very swollen, body. Special blankets called 'Bear Hugs' were wrapped around her feet and hands because of the septicaemia. A lumbar puncture was done to determine what strain of meningitis she had.

Dozing in a chair by her bed, too scared to be away from her, hardly eating or sleeping. 

I can remember at the time thinking: "What's the point putting her little body through all this?" Just to have her with us for maybe only a few more hours?

Thoughts of how small the little white coffin would be, her favourite cuddly toy being buried with her. But 56 hours later, the specialists said she'd made an improvement. They slowly weaned her off the machines that she'd been so dependent on.

Millie had been so poorly that the doctors and specialists who had saved her life said she was a miracle. We had been so lucky, she hadn't been left with any side effects. The doctors had diagnosed pneumococcal septicaemia but it was unconfirmed meningitis due to the penicillin that had stopped anything growing in the blood cultures. We called her 'Miracle Millie'.

Such a frightening, unbelievable nightmare. Would you believe from the start of Millie being poorly to us being sent home with the all clear was only two weeks? But of course that's not where our nightmare stops. It was just the beginning.

We arrived home, over the moon that after everything Millie was OK. But then Lydia, who was three years of age, became ill. She was lethargic, had a temperature and was being sick. 

Tony took her to hospital twice, where they said it was just a virus. Then the doctor said it was an ear infection; nothing to worry about, just keep giving her Calpol. Tony slept on her bedroom floor to keep an eye on her and keep her cool with the fan on. She started to hallucinate, thinking spiders were crawling all over her.

I rang the surgery to ask a doctor to do a home visit. I went through all her symptoms and told him about her sister. But I was told it wasn't their policy to do home visits and it was a virus that would last a week. Tony took Lydia to the surgery in the afternoon.  The nurse that had seen Millie was there and rushed them through. 

They ran for a doctor, who examined Lydia and said: "This is a very sick little girl. We need an air ambulance."

But that would have taken even longer, so an ambulance was called.  Within two and a half weeks I had been blue-lighted with Millie to hospital and now Tony was being blue-lighted with Lydia to the same hospital. The Ambulance man remembered Millie and couldn't believe it.

When Lydia arrived at hospital it was if her little body couldn't take any more and she gave up. They had to resuscitate her. This time they were able to find a bed for her in a PICU that was nearer. By the time the retrieval team arrived it still took another five hours for her to be ready for the journey. Lydia had stopped breathing again in the ambulance. In that time I had arrived at the hospital with Millie. I can remember ringing the hospital where Millie had been, explaining that Lydia was now really poorly and was there anything they could tell us that might help Lydia. The hospitals conversed and information was passed on.

When we were allowed in to see Lydia she was so ill. Again lots of machines. She also was on a life support machine and had multi-organ failure.  How on earth could we be lucky twice? Millie had been a miracle and I was convinced we couldn't have another one. A plastic surgeon came to see us. He warned us that Lydia could lose her arms, legs, cheeks, tip of her nose and lips. All I kept thinking was, Lydia loves painting and drawing, we did it most afternoons. She sucks her dummy and puts the ear of her cuddly toy in the corner of her eye. How's she going to do that? At the time it was such a shock. What was happening around us and being said just didn't sink in.

Lydia was too ill to be moved to the theatre, so they had to do fasciotomies in her bed. Lydia's skin had become so swollen that they had to cut the skin from the back of her knees to her ankles twice. This was to prevent the skin from ripping. The surgeon didn't do it to her arms, he said he would monitor them daily.

We sat looking, kissing, reading to Lydia. Praying and begging, please don't take her away from us. I didn't want to see her poorly toes so I would ask the nurses to place my hands on them under the sheet to put 'Holy water' on them, secretly dreading that I would never be able to cuddle her again. 

Lydia was diagnosed with Hib with septicaemia. For 10 days she was on life support and then she gradually started to improve. We still didn't know what side effects Lydia might have. 

But the first time she spoke and she said: "Dummy, where's my dummy?" I knew she would be OK,- tells Jodie Cross.

We moved from the PICU to the renal ward as they were worried about Lydia's kidneys. But along with her face and arms, they all improved. But unfortunately, her legs didn't. We were moved to another hospital, where we knew that Lydia would be losing toes. After six weeks of her being in hospital it was decided the only option was to amputate Lydia's legs below the knee. We tried to explain to her that the bottom of her legs were poorly, so the doctors would take that bit away and then after Christmas she would have some new "leggies" that she would put on. She was far too young to really realise what we were saying or what was going on.

After the operation I looked at how short she looked under the sheets and thought her legs looked shorter than I was expecting. I thought I'd cried so much over the last 10 weeks that I couldn't have any tears left. But I turned away so that Lydia would not see me cry. The nurses were fighting back the tears.

We moved to the HDU, where they said Lydia would have to be for three days. 

But when we arrived Lydia lifted her very bandaged legs up, peered through them, giggled, and asked: "Could we go to the café and cuddle Millie?" The surgeons and nurses could not believe it. That was it, no need for her to stay there. So, we all went back to her own room that she'd been in previously.

Before the amputations Lydia was being fed through a tube up her nose. Within two hours after the operation, she was asking for "dip and bread sticks".

It was if, after they took away all the bad stuff, Lydia was able to get better and we were able to look towards the future. Eight days later on Christmas Eve we were sent home.

Since then, there have been far too many ups and downs to mention. We were told there was a one in 8,000,000 chance this could have happened - siblings catching different strains of meningitis straight after each other.

But why we like to help Meningitis Research Foundation and tell our story is so that hopefully other parents wont make the mistake we made. We were far too trusting and believed and thought the doctors knew best. Neither of our little girls had a rash but the other signs to the 'professionals' were there.

Some people think we were so unlucky for this to happen. But we don't. We think every day how lucky we are to still have both our beautiful, little girls. 

Jodie and Tony Cross
April 2009