Lilah’s story

Lilah from Penrhiwceiber was first admitted to the Noah’s Ark Children’s Hospital for Wales with diabetic ketoacidosis (DKA on the 27^th of September. Ten days later she developed a blood clot and a brain bleed and was moved to the paediatric critical care unit (PCCU). Though worse on the left side, the bleed had effected the whole of Lilah’s brain, meaning that she wasn’t able to move or breathe unaided. There was also damage to the parts of her brain which controls speech and understanding.  Mum, Lindsay, was told to prepare for the fact that the little girl she had known could be gone forever.

After three long weeks on PCCU, Lilah was finally considered stable enough to move to Owl Ward.  For Lindsay, this is when the reality of their new situation hit.

“At this point, Lilah was still completely unresponsive. She couldn’t move any part of her body, including her eyes, and there was absolutely no sign that she recognised or was responding to me or anything else.  The gravity of the situation hit all at once and I just collapsed emotionally.”

It was at this point that Lindsay was introduced to the charity’s ward counsellor, Shareefa.  Lindsay continued: “I truly believe that there are people who are supposed to cross your path in life. Shareefa helped pick me up off the ground, both literally and emotionally, on that day and she’s been there, providing me with the support I’ve needed at each point ever since. Being in hospital with a child facing a life changing diagnosis while being away from everything and everyone else I knew was the loneliest feeling I’d ever had.  It felt like I didn’t have anyone to turn to. But then, when I met Shareefa, I did.”

 

 

 

Having always believed in the positive impact of music on the brain, Lindsay started to play Lilah her favourite music in an attempt to stimulate her senses and memory.  So when she was offered a session with music therapist, Becca, Lindsay jumped at the opportunity.  She said:  “By now, Lilah could move one of the fingers on her right hand so Becca put a keyboard in front of Lilah and laid her hand on it.  When Lilah pressed a key, Becca would respond with the instrument she was playing.  Slowly but surely, with just a  finger at first and then progressing to  a whole hand,  Becca helped bring my daughter back to life through music.  When Lilah defied the odds and started to speak, her only word for weeks was ‘chicken nuggets’.  So Becca put that to music too, and I’d hear them down the corridor singing the ‘chicken nugget’ song together.”

Lilah started a neuro-rehabilitation programme and with intensive support from her team, she continued to improve.  But the road to recovery was long, and their stay at Noah’s Ark ended up lasting six months.

Hospital days can feel long and lonely, and for Lindsay,  the prospect of spending so long away from her two longer children and the rest of their family, felt huge. Christmas was just around the corner, as was Lilah’s birthday a few days before it. Lindsay felt sad that she wouldn’t be able to give her daughter the big celebration she’d talked about before she became unwell. Thankfully, the Noah’s Ark Sparkle team were there to help. Lindsay said: “Sparkle co-ordinators, Emily and Yvette turned what I thought would be Lilah’s worst birthday into her best yet.   They made her a crown, showered her with gifts and organised a birthday parade in her honour which her siblings were able to join in with.  I hadn’t smiled properly in months but I smiled so much that day that my cheeks hurt.”

But Lindsay says it wasn’t just Lilah’s birthday that the Sparkle team made special – it was every day.  They bought therapy dogs to visit and set up a grotto in the hospital garden at Christmas, arranged a photo shoot for Mother’s Day. They even bought special visitors like the rugby team and panto cast to meet Lilah.

Lindsay said: “Together, between the counselling, music therapy and sparkle, the charity’s emotional wellbeing team, have really pulled us through these last six months.  They have bought light to a place that can feel very dark and happiness in a time where I least expected to find it. It doesn’t take away any of the hard things that we as families face here, but it’s difficult to stay down in the dumps for long when you see your child singing and dancing and when you have people you know exist just to be there for families like ours along the hospital journey. It’s been a long old road and I can’t imagine how we would have got through it without them.”

Lilah left hospital at the end of March and after a short stay at her local hospital, has now been home for four weeks.  Lindsay says Lilah misses her friends at Noah’s Ark a lot but they all love being together as a family again.

Lindsay said:  “There were definitely points where I gave up hope that we would ever leave hospital with Lilah so that journey home was surreal. There are times since then when I can’t believe it happened to us but then others where I can remember so vividly how it felt to go through that experience.

“Days in hospital with a very ill child are long and frightening. You feel a whole range of emotions from anxiety and fear to guilt  and loneliness. I’m so glad I had a counsellor to help me through it and I’d encourage any parent in a similar situation to get that help if they can. I’d also say take the time to take care of yourself, to step away, to talk to other parents and to cry if you need to. I think as parents we can be extremely tough on ourselves when our children are unwell and convince ourselves that we’re not coping. We do cope though, day in and day out, but getting that help is so important.”