“I'm writing this in the hope that I can help other parents get through what we are going through.
Also to help our friends and family understand and know what we've been through so far. We have a very long journey ahead of us but we count ourselves as the lucky ones because our beautiful daughter Skye is still with us.
“It all started on Monday 14th March at around 2am. My daughter Skye, who was 16 months old, woke up crying with a high temperature. Not unusual as kids get colds and go through teething at that age so I gave her some Calpol and put her back to bed. In the morning I went to work as normal and left her with her grandparents.
“In the day as always I was in contact with them. They said she was still under the weather and as my husband, Skye's father Gavin, works from home I got him to take her to the doctors. The doctors gave her antibiotics for a chest infection. I came home and we started them straight away. The next day she was still very poorly so I stayed home with her.
“By the Wednesday she seemed a little more awake and started to play a little. She absolutely hated the antibiotics, so it was becoming more of a fight. She threw up her lunchtime lot, but as she was playing I thought she was on the mend.
Wouldn’t leave my side
“Thursday hit and she was really poorly. She wouldn't leave my side and was very sleepy. Her temperature was still sky high so I called NHS 111. They wanted us to be seen but it was going to take a while, so my husband Gavin and I took her to A&E. She barely woke up while they were checking her over. I kept saying to Gavin I was worried it was meningitis but there was no rash anywhere.
“They checked her over and decided to send us up to the children's ward. I was so worried about her. They took blood tests and put a cannula in just in case. She then woke up a little and had something to eat for the first time in days, but the doctor came back and said it was a bacterial infection and we would have to stay in for two nights while she had antibiotics, so we settled down and went to sleep.
“We were then woken up at 11.30pm by another doctor, who said it was just viral and we should go home where we would be more comfortable. I was concerned that they were kicking us out late at night and I was still very worried about Skye. We took her word and went home. Friday arrived and she was still very poorly, but was sitting up a little more and she tried nibbling on bits of food and had no temperature, so I wasn't too worried. At 11.30pm that night Skye woke with an extremely high temperature, so we called the ward and they told us to give her Calpol and Ibuprofen and then put her back to bed, so that's what we did.
“Saturday morning, and I went into her room to find her just lying there, awake but with a really high temperature. As I picked her out of her cot her eyes were twitching and she wasn't moving, so I called NHS 111 again and they called an ambulance and we waited in A&E again for ages. A doctor came down from the ward and said she needed a chest X-ray. By this point I was in floods of tears as seeing your daughter like that was horrific. They then wanted to take more bloods from her.
Pulled around like a rag doll
“As they were taking them, her right eye pupil just went huge as she looked at me so they rushed her down for a CT scan. That was such an awful experience as she was just not reacting to anything; she was like a dead weight just lying there. My little baby who we fought so hard to get in the first place was being put in this huge machine and pulled around like a rag doll. I fell to the floor crying, praying that she would be okay.
“Back on the ward they said nothing showed up on the CT scan, which was good, but they wanted to do a lumbar puncture. They took her away to do it as they said it's not nice to see. Then the worst news came back, the doctor said the fluid should be crystal clear and it wasn't, so they used the word meningitis. Our world started to crumble around us as they put her on antibiotics straight away. To watch your daughter go through all of this literally broke my heart.
“We were put in the HDU the next day so that she could be kept a close eye on. It was an awful room where you just couldn't hide. Results came back and confirmed it was actually pneumococcal meningitis; that's why there was never any rash. In the hospital things never seemed to get any better. We'd get the odd glimmer of our beautiful bubbly Skye come back but then nothing. She was having tests after tests and yet they just couldn't ever work out why she just wasn't waking up properly. It was awful.
Super high temperature
“At our stay at Worthing Hospital Skye had two lumbar punctures, three CT scans, blood tests every day and two chest X-rays. She also had an EEG test, which we had to have hospital transport to take us to Haywards Heath for. Skye had to lay on me the whole way there and back, it was awful for her. She was still having super high temperatures.
“Tuesday 29th, the day started happy as Skye looked like she was stretching and waking up loads, which was the first I'd seen. By the end of the day she was stretching loads. The doctor came in and asked if she had been doing this for long. We said ‘yeah, all day’ and that's when we found out they were seizures. I felt awful that I'd missed it but nurses had been in all day and no one mentioned anything. Within half an hour they got a lot worse and she was in a really bad way. I wouldn’t wish for anyone to have to see their child like that. They just kept getting worse, so the doctors gave her some medicine to calm them down.
“The next day the doctor said that we really need to be transferred to London because Skye isn't getting better and needs more than they can offer her. We packed up ready and decided we both needed to stay with her for the night. Within a few minutes of dozing off there were doctors and nurses all around her, her body was fighting the medication and her seizures were out of control. The plan from here was to put a breathing tube down, knock her out and call a response team to come and take her to London asap.
“Nothing could have prepared us for that night and what we were about to see. Skye knocked out by drugs, a breathing tube down her throat and hooked up to all these machines. After hours of that and lots of travelling, we arrived at Great Ormond Street on Thursday 31 March at 4.30am.
“She went straight into intensive care. My tiny baby had no idea where she was. Still fast asleep, they wanted to keep her under sedation because they were planning to do an MRI scan on the Friday morning. It felt like our world was falling apart right in front of us. The Sick Children's Trust put us up to stay. They are a charity so survive on donations.
May never walk, talk, move, see or hear
“Friday morning hit and we literally had our hearts in our mouths. She went down for her MRI and we just felt so sick! A couple of hours later we were taken into a room where about eight doctors surrounded us telling us the worst news we could ever imagine. Skye had severe brain damage. They carried on to tell us the worst case - she may never walk, talk, move, see, hear or even breathe on her own ever again. They said she may not even make it to adulthood. Our world was falling down right in front of our eyes.
“We were in intensive care for nine days. It took four attempts and a camera down her throat before she could manage to breathe on her own.
“We finally got to the neurology ward where we could start waking Skye up and find out exactly how bad the extent of her brain damage was. She started to wake up really cranky, not that we could blame her. She was still having high temperatures, which they were worried about, but it looked like she also had the flu. They think she caught the flu first, then when her immune system was down she got meningitis. The more she woke up, the more we realised she had involuntary movement in her left side. She was getting rashes all down her left side where she was moving so much, she couldn't get to sleep because her brain just wouldn't stop all her movements. It was awful to witness. They were playing with all her medication to see what would help her the best.
“Great Ormond Street was unbelievably amazing. People were in and out of her room 24/7 trying to help her; doctors, nurses, speech and language, physio, occupational therapy, infection control and social workers. Then Chailey Heritage got involved as they were the best place for Skye to start her rehabilitation. We got the phone call to say we have a place there and we started her rehabilitation on Monday 9 May.
“As GOSH had done all they could for us we were being transferred to Brighton Hospital, as they had everything Skye needed and it would be better for us to be closer to home. We got to Brighton and they carried on with the plan that GOSH had put us onto. After a week I was very used to feeding Skye through her NGT and giving her all her medication, so they decided to let us go home until we went to Chailey.
“Being at home as a family for the first time in six weeks was absolutely amazing. We loved every minute. While all this was happening Skye started to smile, laugh, grab toys, see, hear and recognise people. All the things we thought she might not ever be able to do, so the hope continues and we couldn’t wait to get to Chailey and see what else this amazing, beautiful daughter of ours could do!
“So, to all the parents out there, no matter what they tell you and how hard the journey may be, all kids are different and they will amaze you forever. Skye's strength and bravery has got us through the whole lot and continues to amaze us. Never lose hope and keep strong! I really hope this can help others. As one nurse said to me, we've seen children with the worst MRI scans run out of this place and children with not so bad MRI scans not do so great. You just never know. One thing we all have is hope.
Arrival at Chailey
“The last 10 weeks in rehabilitation have been an absolute rollercoaster. Wednesday 11th May, our first day at Chailey Heritage clinical services, was one of the most emotional days for me. We arrived at 2pm that day. I had been so nervous and anxious all morning as we had just got used to all being at home together again, but after 11 days at home it was time for me to pack our bags and leave our home and family life again.
“We were shown around the building we were staying in. I was already extremely emotional that day but seeing our room for the first time, where we were going to be living for the next four weeks, just made things worse as it looked more like a kitchen (little did I know I was the lucky one with my own back door and patio). We were shown the other children's bedrooms that were upstairs and I felt like they were just so much more homely and had been made to look like a proper bedroom.
“Seeing the other children is very hard to take in at first and can be very upsetting to see until you get to know them. I try not to ever cry in front of Skye because she is one tough cookie but on this occasion I couldn't stop myself. I pretty much cried the whole afternoon and to think I was going to go up there alone. Luckily my in-laws insisted on coming with me. Skye picked up on my emotion and got herself into a right state, which made things worse. The doctor came in and checked her all over and gave us a run through of what was to come; scary but I knew it was the best place for her.
“The therapy started. It was brilliant - our first full day there and she was made her own chair to support all her needs. It was so lovely to see her sitting comfortably. Every day she would have an hour of physiotherapy, an hour of speech and language and an hour of occupational therapy. For the first week or so she cried a lot, she had lost all her trust in everyone. It was heart-breaking for a mother to watch her so frightened of everyone but who could blame her as she had been poked and prodded like a pin cushion. Speech and language got stuck straight in with her eating and drinking, testing her on different textures and putting thickener in her fluid. She has done so well with her eating, it's incredible. Not so great with her fluid unfortunately. Only now after 10 weeks at Chailey is she picking up her cup to drink. We have been through so many different cups to find the right one for her.
Her favourite word is ‘bubbles’
“Speech and language also started to play and talk with her to find out what she can do, and to find out if she remembered how to play. Hearing her trying to talk all the time is heart-warming; the more they tried with her the more she tried back. She's still only saying a few words and 'bubbles' is her favourite, but that's way more than we ever thought she'd say. She's coming along well and they feel she is where a 20 month old should be with her speech and play. She is now pointing at everything she wants which is great communicating; the only thing is she wants everything hehehe.
“Next up was occupational therapy. They concentrated mainly on trying to get her right arm moving again. The right side of her body is very stiff and therefore she doesn't really use it. Her right eye was very deviated when she first arrived and her sight in the right eye isn't as good as it should be. She may not always see her right arm and forgets it’s there. The doctors have played with her medication loads and she can now move her arm but doesn't really open her hand and she can't pick things up. Occupational therapy is all about that particular movement in the hands. They have so much equipment on site. They made her a chair that she can sit on the floor in but also it makes her use her core so she is doing some work herself. It helps retrain the body and muscles.
“Skye also has a splint for her right hand as she likes to tuck her thumb in really tightly and we don't want it to get stuck there, so the splint opens her whole hand out. They did a lot of work with her using her right hand as she is getting so used to not using it that her left is doing everything for her. I've started to make lots of sensory bits and bobs as its good for her to feel things on the right hand side. We did so much fun messy play while we were there like jelly, spaghetti painting and we also made some awesome Father's Day hand and foot prints which he absolutely loved.
“We would hold her left hand down and try and get her to play with her right, to be honest she is so strong willed she wasn't up for it at all. Our new thing now is to get her to clap all the time so she remembers her right hand is still there. When she is sitting unaided and wobbles over she will always put her right arm out to catch herself, which is a good start.
Physio has been incredible
“Physio has been absolutely incredible to watch. When Skye arrived at Chailey she couldn't even hold up her own head and it was like having a baby again. Our first physio sessions taught me not to support her as much as I do and let those muscles build back up again. It was incredible, she just got stronger every single day. We started with the head holding, then onto sitting. It's not easy for Skye to do any of these normal things anymore because she is so stiff on the right side of her body and she has involuntary movements on the left, something we find so simple like sitting is extremely hard work for Skye. For the first few weeks she would cry the whole way through physio, she didn't want to be touched and she definitely didn't want to be put in positions she was uncomfortable with but, my God, Skye Lily is incredible and she has fought every single day.
“Every session of physio she just got stronger and stronger and in the end didn't need any support with her sitting. She has also started to roll both ways and can bring her head right up onto her tummy. Skye was fitted with some special boots for standing and walking and because of her involuntary movement in her left side she kept bringing her knee up and toppling over. These boots are heavy and keep her foot at a right angle, as we think that's where the involuntary movement comes from and then travels up through her leg. She still needs to be aided but to see her standing and see how tall she has become is just amazing.
“In the 10 weeks she has made some incredible progress and I'm so lucky to have been there to watch every single moment. I'm still only human and a mother of a 20-month-old baby and there isn't a day that goes by when I don't have a little cry to myself, wondering what she would be up to now if this hadn't happened or looking back at old photos or videos of her running around.
“I have so much guilt in me. I wish when we were at Worthing Hospital I had voiced my opinion more and requested to be sent to London first as I knew she wasn't getting any better. Sometimes when I'm in the car alone with my music up loud I just break down and cry. It gets me at the strangest times but even when we were at Chailey and I needed to break down I'd go to the toilet so Skye couldn't see me.
Weekend leave
“We were allowed weekend leave the first week we got there which was amazing, to come home just for three nights and be a family and be able to share a bed with my husband was amazing. After the second week they realised I wasn't using any of the carers at all as I was doing everything myself so they let us be day patients instead. We were so excited about this because we had had weeks of living out of a suitcase, never knowing if we were coming or going.
“I turned 31 while we were there at Chailey and anyone who knows me knows I love my birthday and I stretch it out for as long as possible. However, this year was very different, waking up on our own to Skye crying at 5am and no one there to wish me a happy birthday was a whole different matter. Skye hadn't slept through for months and I was absolutely exhausted, more so than when she was a baby as I just wasn't sleeping well there at all.
“It’s now 20 May and we can be home as a family. It was amazing to unpack and put all our clothes in the wardrobe and be back home with my husband and lovely dog again. We had a big family BBQ that day to celebrate my birthday and us being home - it was what we all needed. Poor Gavin had been working all day then coming up to Chailey to help me put Skye to bed then went home exhausted, so it's nice to have some normality. Because we were no longer staying they managed to stretch out the funding for an extra six weeks. This was amazing news because Skye was making so many improvements. We had our first family day out in months on 22 May, just the three of us. We took Skye to the Sealife Centre and she absolutely loved every minute of it. I think her favourite part of the day was the train journey; she's such a nosey little monkey.
Looking out of the window and being nosey
“Unfortunately, the journey at the beginning was making her very sick and a couple of times I had to pull over and change her as she got herself into such a state. In the end I found the best thing to do was to put her back in her baby car seat. She loved it as I put toys next to her to keep her amused and all went well. She is now back in her big girl car seat, which is front facing so she can look out of the window and be nosey. We just couldn't have her in it at first as she didn't have the strength to hold herself.
“By 26 May we decided to put Skye back in her own room to sleep, as she just wasn't sleeping in our room and was waking loads. We were exhausted so would try anything. A behaviourist gave us a few tips as to what to do. Gavin took the first night (he's stronger than I am with things like this). The plan was when she cried to go in after two minutes, make no eye contact and tell her you're still here and it's okay, then walk back out. Gavin ended up doing this for three hours (I would have given up and had her in our bed). The following night I did it for about an hour; since then she has gone through the night more often than not. INCREDIBLE!
“Although it's been a hard journey so far and also very lonely in Chailey as we can't really have visitors and at times I've just wanted to pick Skye up and run away, we are so lucky. I want other parents going through something similar to have hope. We were told there would be so many things she wouldn't be able to do as her brain damage was so bad, but look at her now! She eats, drinks, plays, smiles, laughs (a lot), sits on her own, sleeps through the night, stands aided and, fingers crossed, one day will walk again. Every day I wake up to Skye chatting away to her toys - that puts a smile on my face. Even better is the smile I get when I go into her bedroom in the morning; nothing in the world beats seeing that smile. Watching my daughter fight so hard every day makes me so proud I could burst. There is always hope and that is what has kept us all going.
“A huge thank you to everyone at Chailey Heritage Clinical Services because they truly are our heroes. They have worked so hard every day to help Skye. Truly incredible people and Skye has grown to love each and every single one of them. It goes without saying, a huge thank you to our incredible family who are always there for us no matter what and my poor dad who always gets the phone calls from me when I'm having a breakdown. You are all amazing and we just can't thank you enough.”
