Willow's story

6th November 2014

Zoe’s beautiful daughter Willow was born six weeks premature and came home after spending six days in hospital. But she was lethargic and not feeding properly. Here Zoe recounts what happened next

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Lethargic and not feeding

After Willow was discharged we had a neonatal nurse visit our home to monitor her health. Over the next six days the nurse visited around three times. But she didn't pick up on any of Willow’s signs and tried to say everything was fine.

She ignored my worries until the day I was so frustrated and very worried about Willow that I asked her to leave and said I was going to another hospital for a second opinion. I was not happy that she would not see that something was wrong, help my girl or see why she was not waking or feeding.

I had even demanded blood tests during this week to try to find the reason to explain why Willow was presenting as she was. The nurse rang the hospital for us to visit later than day but commented that she had a very persistent mother, who refused to accept her findings that her daughter is okay and demands reassurance from another professional other than herself. Mother was worrying, she said but she's okay and she has seen her feed despite it being only a few seconds.

The hospital agreed to see us. Upon arrival after just a minute with us we got the shock of our life. Willow had meningitis. It was not suspected – it was a definite case and we needed to act now or she will die.

Willow began treatment covering each and every type of meningitis. A lumbar puncture was done. And she was very poorly. During the night, Willow needed oxygen to help her breathe. The next morning she was transferred into intensive care.

Photos of last cuddle

My mum came and she rang family members, who came to be by her side. Not long after Willow and I were cuddling – I had to ask the doctors for permission to take her from the incubator for a cuddle – and my mum took photos of what could have been my last time together with my pretty little princess.

Her dad arrived and was picking Willow up for a cuddle when my mum alerted the doctors that Willow’s heart rate and breathing were slowing. They rushed to Willow and dad never got his cuddle.

Willow stopped breathing and special teams helped to ventilate her. This was a huge problem as they struggled for many hours. They held a breathing bag firmly pressing the bag very slowly to take oxygen to Willow’s lungs. Most of the air kept going to her tiny belly. Nobody understood why this was happening.

Willow was placed into a medically-induced coma. Me and the rest of the family had to leave the room. I've never felt pain like it felt walking from the room where she lay in a deep sleep looking so lifeless; not seeing the little frown on her beautiful face, placing my finger into her hand and her not squeezing my hand. It felt like she was gone, it was so heartbreaking.

A team of doctors and nurses and specialists called in from northwest ambulance transfer team and specialist doctors from Manchester Children's Hospital all helped to keep her breathing - trying their best to save our little girl.

They took her to theatre to put a camera down her throat to see what was happening and why she could not ventilate. I explained that she's not happy laying flat and she needs a rolled blanket around the back of her head as though it was my arm. This was something I noticed from home and the doctors did it, which helped to keep her breathing.

Terrified and heartbroken

In theatre we were told she may need cuts to her neck to help her breathe and she may have her tubes inside crossed which would need an operation. I was terrified and heartbroken - I didn't want her to be in pain or to get any cuts and scars. My family took us for dinner as it would be a long wait, but the first bit of good news came - Willow was ventilated and no problems found and no operations needed.

She came out in a tiny little incubator on a trolley which looked like a time capsule. In this she was safely transferred from Royal Bolton Hospital to Manchester Children's Hospital intensive care. She remained in a coma for six days on life support machines and I was fortunate enough to receive a bedroom in the Ronald McDonald house next door for me, her dad and her two siblings, Emily and Alfie, to stay.

Willow was found to have viral meningitis and slowly she fought back, being tube fed my breast milk and with all the many cannulas she had in her tiny little veins and the many long lines taking her medicine through to her. My beautiful little girl didn't get worse during her stay in intensive care. Doctors fears she would have a seizure or possibly not wake up but these turned out to be only fears. She slowly began to get better until she woke up.

My girl, against the odds, showed us just how strong she was. She had a CT scan which showed she had a brain bleed too. But, after a couple more days Willow was transferred back to Bolton Hospital on 23 December – closer to home.

She spent four weeks in hospital altogether. When she came back to Bolton the staff were so pleased to see her and see how healthy she was now looking. The ward was closed for norovirus so visitors were not allowed, but we were very lucky to be allowed home over Christmas and New Year to be with Willow’s dad Ashley, sister Emily and brother Alfie. These precious few hours were the only thing that pulled us through such a traumatic experience. Willow had a lovely time at my mother’s, Maxine, seeing the family and being together on Christmas Day.

Just after New Year Willow had the results of her second lumbar puncture. She was now better and free to go home. We could not thank the staff enough for saving our princess. During our stay it was very upsetting. Willow had so much pain from lots and lots of cannulas and long lines it was heartbreaking watching her.

What she went through saved her life

But all of what she went through saved her life. It will always be with me watching the pain and feeling the heartache watching my pretty little princess weighing just under 5 lb go through so much. But I've never been so proud to know she's my little girl and that she beat this and she's home with us to complete our happy little family.

We celebrated with fireworks and a tea party with the five of us and my little sister Ellie Jo. But only 12 days of happiness passed where we would watch her every movement and every feed time and try to cherish every moment until our fears once again became reality.

Willow suffered six seizures and was re admitted by ambulance to hospital. A third lumbar puncture showed Willow had meningitis again. We never expected she would ever suffer this a second time and be so unfortunate to have all this pain again.

Luckily Willow didn’t need life support this time. She was lucky to get treatment fast and once this started she didn’t have any more seizures. She was transferred to Liverpool Alder Hey hospital for a central line. Again, she was put to sleep and taken to theatre. I had to leave my girl crying in a nurse’s arms. It broke my heart and I sat waiting to see her after the operation.

I ran back through the doors straight to the room when I heard my girl’s little cries and was so happy to hold my princess – I feared every time she was put to sleep she would not wake up. I made sure the staff knew all her history and I made sure they did the operation with her blanket under her neck as though it was my arm and I was so incredibly proud of my little girl once again.

After theatre her heart rate was very fast and doctors could not understand why. They assumed it was shock. An x-ray showed the central line was fitted right. She was transferred to a cardiac ward and had emergency medicines injected to her heart regularly to bring her heart rate down and she was also submerged in freezing cold water and ice up to her chin to slow her heart rate down.

Cry, stand back and allow them to save her

She was extremely distraught, upset and very frightened and all I could do was cry, stand back and allow them again to save her. The following day a heart scan showed the line was in her heart, causing the heart rate to go so high. A few seconds later after they ripped the dressing from her leg and pulled the line back two inches her heart rate dropped and she was fine.

With much relief she was transferred back to Bolton the same day. After three more weeks in hospital Willow was free once again to go home after a fourth lumbar puncture said she was again clear of viral meningitis.

Since then Willow has remained healthy and at home she has medicine for meningitis daily to prevent a third attack. We know she houses a cell in her blood that can activate meningitis at any time, so she is watched closely by us and doctors. She sees consultants regularly at Royal Bolton and Manchester Children's hospitals who manage her care very well.

She has had blood sent to New York and will shortly receive updates to see if they’ve been able to find a cure for her. Hopefully, this  research will help many more children and adults suffering meningitis worldwide.

Willow’s had various battles at home but she's a very strong little girl who has overcome many problems in her time and shows us every day what a beautiful and unique inspiration she is to many. Her family and friends are very proud of her.

Since Willow came home we have carried out fundraising for Meningitis Now, so far raising £1,450.40. We look forward to working with the charity throughout our futures.

I hope people out there reading Willow’s story can see how lucky she was to survive and that meningitis needs as much support as possible to help research cures and help the families affected by the disease.

Meningitis is real – it's out there affecting many families every second of every day. We were lucky and so many are not.