Lili’s story

Baby Lili was only ten days old when she was diagnosed with viral meningitis. Within 24 hours of that diagnosis, Lili had turned grey and she was struggling to breathe so her concerned parents, Martha and Hedd, took her to A and E. A few hours later, after some further tests, they received the news that Lili had a suspected blockage in her artery and that she was being rushed to Bristol for an emergency operation. The following day, they were told that their baby may be brain damaged, could possibly go blind, and then that she may not survive at all. It was a huge amount to take in for a family who, only three days earlier, had been happily enjoying the birth of their healthy new baby.   

Lili was diagnosed with dilated cardiomyopathy and mitral valve regurgitation, meaning that her muscle walls were stretched and thin and that a faulty valve in her heart was allowing blood to leak backward. Thankfully at that point, Lili was able to be stabilised with medication and allowed to go home but only a few weeks later, she caught a virus. Too small and medically vulnerable to fight it off on her own, Lili was re-admitted to the Noah’s Ark Children’s Hospital. Hedd and Martha spent Lili’s first Christmas apart – one caring for a baby in hospital and the other caring for Lili’s sister, still only three herself.   

Over the coming weeks, Lili spent time at home, on the intensive care unit and on Pelican ward, in varying states of wellness. But suddenly her heart function deteriorated. The leak in Lili’s mitral valve had got far worse she was having episodes where her heart would stop beating completely for up to nine second at a time.  As Lili’s situation was so complex, her clinical team consulted with colleagues at Great Ormond Street (GOSH). Though the only option viable seemed to be further heart surgery, potentially even a full heart transplant, there were concerns that Lili was just too unwell to cope. It took a week for the team in GOSH to come back with their advice, during which time Martha was gently told to prepare for the fact that palliative care may be the only option for Lili.   

Martha says:  That week was undoubtedly the worst week of my life. I was sitting in a hospital waiting to hear if my daughter would live or die and all I could think about was how only a few months earlier I’d just been a normal mum excited at the prospect of having two daughters. 

“I wracked my brain trying to think how all this could have happened, questioning what I’d done wrong or what I could have done to prevent it. My guilt then gave way to anger that I was having to deal with this wait alone while my partner had to work, followed by jealousy of all the other parents who were just out there, happily pushing healthy babies in prams. Then I’d crash with guilt at thinking that way. It was just this huge washing machine of emotions that I didn’t know what to do with.” 

It was at this point that Martha met Llinos, a psychologist on the paediatric critical care unit whose role is funded by the Noah’s Ark Charity.   

Martha continues: “Llinos was there solely to listen and support so she performed a different function to everyone else. But because she was situated in that medical environment, she also just got it. During that awful week she would come to the bedside and just let me talk. She’s there to care so I felt like I could release all those overwhelming feelings without judgment and be reassured that many other parents in my situation felt exactly the same. Just knowing that made me feel so much less alone.” 

Finally, the decision was made to operate on Lili in the hope that her valve could be repaired. Though an initial date for surgery was pencilled for two weeks’ time, there were fears that Lili would not last that long so she was taken to Bristol by the WATCH team for surgery later that week. The procedure would take six hours to perform and Lili was given a 50/50 chance of surviving it.  Martha says that she and Hedd walked around Bristol in a daze during those hours but returned to the hospital to be greeted by Lili’s surgeon who confirmed that the operation had been a success. Martha says in that moment, they felt such an incredible sense of relief. 

Psychologist, Llinos, kept in touch with Martha, during their three weeks in Bristol, calling regularly to check in and offer Martha an opportunity to talk. Since Lili’s return to Noah’s Ark, there have been some more bumps in the road, largely due to some issues that Lili has with her digestion.   

Martha says: “Sometimes it’s just really overwhelming. There’s always so much information to take in so Llinos and I have worked on some grounding strategies to help me cope. She’s also suggested some practical things like taking a nurse with me to meetings with the doctors which has really helped.    

“We’re still having a lot of setbacks and that can be really hard to cope with when you feel like you’ve made progress. One minute we’re talking about going home and the next Lili will crash and we’ll be back up on the critical care unit. I don’t really think about the future now, I’m just waiting for the next crisis. I’m constantly mentally bargaining for little things – ‘please don’t let me get a call in the middle of the night, ‘please let tomorrow be a good day.’ Living like that takes a massive toll on your mental health on top of the lack of sleep, the guilt at being separated from my other daughter and the knowledge that Lili’s condition will be with her for life. Our life has changed completely in a really short space of time.  

“It’s hard not to feel negative but I’m really glad that Llinos is on hand to work with me on all of that.  She helps me process it in a way that I don’t think anyone else could and being able to speak to her has been like a breath of fresh air in a situation that can often feel suffocating.” 

In just a few short weeks this winter, incredible supporters like you helped to raise more than £113,000 for our emotional support appeal, Here for You.  We’ll have more to tell you about the new services being set up as a result of that funding very soon. But here’s how your support is already providing psychology services to families just like Lili’s.