Molly's Story

“When I was pregnant with Molly, I was having extra scans because of my age, and they discovered on one of the scans, 4 weeks before Molly was due, that she had an enlarged heart and so was induced straight away as the doctors were concerned.”  

“When I gave birth to Molly her breathing kept stopping and they rushed her away, I couldn’t go and see her as I needed surgery. When I came round from surgery, they informed me that Molly had to stay in the Neonatal Intensive Care Unit (NICU) as she had heart complications, they didn’t know what it was at the time and she was attached to lots of machines as her heart wasn’t stabilising, and I was told that she probably wasn’t going to make it.” 

However, Molly was a little fighter and amazed the medical team by making it through the next 5 days in intensive care while tests continued, to ascertain what was wrong with Molly’s heart.  

“Thankfully Molly’s heart stabilised and I was able to take her home. Nothing more happened until we had bad snow in February 2019, Molly’s lips went blue, and she became lethargic and so we had to rush her into A&E. We drove through lots of ice and snow and there was a massive team waiting for us when we arrived.” 

Molly stayed in Exeter hospital for a week on that occasion as she was still having heart palpitations as well as problems feeding.  

Molly was then transferred to Bristol hospital for more monitoring and scans where a diagnosis was finally found. Molly had ‘Left Ventricular Non-Compaction Cardiomyopathy’, a rare heart muscle disease where the left ventricle doesn't develop properly.  
 
The family stayed at Bristol hospital for 1 month, Molly had a feeding tube and once she was stable and had put weight on Molly and her family were sent back to Exeter hospital.  Mum, Shelley, was given training on CPR by the medical team but was told that it was very unlikely that Molly would make her first birthday. However, Molly continued to progress, and they now must travel to Bristol hospital once a month for regular checkups. Shelley explains what day to day life looks like for Molly: 

“On the surface Molly appears as a completely normal little girl, she is a miracle to have made it through, and she does live a fairly normal life, although she has now also been diagnosed with autism and ADHD. Unfortunately, this means that Molly can’t self-regulate and must be constantly monitored.  If she starts to have signs of blue lips or feeling very lethargic, then people must step in, calm her down and keep an eye on her, she has a very detailed action plan at her school.” 

But her diagnosis doesn’t stop Molly from doing things that she wants to and making amazing memories along the way, 
including recently going on her first rollercoaster!  

“I was petrified” recalls Shelley “but thankfully it was fine, and she loved the experience. Doctors have now told me that it could be that Molly will live a full life with medication, or it could mean that she will need a heart transplant when she is older, or it could be that one day her heart will just stop and in that instance there is nothing that can be done.” 

This is a constant worry for Shelley and her family, and where the support of Little Bridge House has been a lifeline for them, both physically and emotionally.   

The family’s journey with Little Bridge House didn’t start until 4 years ago when Shelley decided to have a day visit to see what the hospice was like: 

"I first heard about Little Bridge House when we were at Bristol 
hospital when Molly was a baby, but it wasn’t until 4 years later that I decided to go, and I regret not going sooner. On our very first visit me, my partner and the 3 children went, and I didn’t know what to expect, I didn’t have any real expectations at all, and it was so lovely!"  

"Everyone made us feel so welcome, it was like coming home. Even though we had never met them before, the Care Team all knew our names and really made that effort, and even people that weren’t dealing with us directly were all saying hello and smiling and happy to have conversations with us."  

"Bobi was only a few months old at the time and one of the Care Team said, ‘Oh I’ll take him’ and they took him off so that we could eat, and it was just really lovely. Molly felt like an absolute princess, she really loved it. She had never been in a bedroom on her own before so we were worried about how she would take that, but she just took it all in her stride and absolutely loved it. Everyone was so fantastic and just looked after the children as much as possible so that we could have some adult time for ourselves and a much-needed break.”  

Shelley explains that nothing is too much trouble for the Care Team during their hospice stays: 

“We love coming to have our hospice stays at Little Bridge House, there are always offers of fun things like midnight snacks and movie nights, the children are always getting spoilt with sweets and treats, nothing is too much effort there. It is very much a holiday for us as a family which we look forward to and try to book in during the summer holidays every year. We also try and visit for the hospice days and events that they put on.” 

For the family, who live in Crediton,  a 45 minute drive from the hospice, this means that it’s far enough away from home that they feel it’s a break, but close enough that going there for the day isn’t too much, and there’s always lots of fun things to do at Little Bridge House to keep everyone entertained: 

“When Molly is at the hospice, she likes to do everything! She will spend most of her time in messy play as she’s very creative, and she also loves going out to the garden and riding the bikes. She makes use of everything there, like the games room where she will play on the Nintendo DS or Xbox, and then she’ll run over to the soft play room. I do feel sorry for the nurses at the end of the day as they are literally running around all over the place after her!” 

It’s not just the support Little Bridge House provides for Molly that’s so beneficial, her siblings Willow and Bobi are looked after too: “For Willow and Bobi, they also love the messy play room, a chance to express themselves and spend time with the Sibling Support Team, who they love. Bobi especially loves to follow Beth from the Sibling Team around, which is really nice as we can just sit and have a cup of tea and I can read a book, something I can rarely do day to day. Bobi also loves to play with all of the amazing toys in the front room.”  

“Having brought the 
children up on my own, I am still getting used to having time to myself when we are at Little Bridge House. It’s not that I don’t trust the Care Team, as I do completely, it’s just that I feel like I’m missing something when I’m not with my children, so I tend to still hover around. I’m trying to work on this, so I will go and have a cup of tea and read my book for 10 minutes and then go and find them again. The Care Team are trying to encourage me to take more time for myself, which is really lovely.”  

Shelley shares that she regrets not coming to Little Bridge House when they were first referred, as the support she receives now would have been so welcome looking back: 

“I really do regret not going to Little Bridge House sooner, as I think it could have helped ease some of my mental load, especially through some of the darker days when I could have used their support and advice. Now, just having the friendly faces and knowing that they are there to support me when I need them helps me so much.  

We all look forward to going to Little Bridge House and the children love to play with other children staying at the same time, and I have also made friends with other mums.  

We are looking forward to coming and staying in the summer and will be attending the family fete for the 30th anniversary of the opening of Little Bridge House. We are so grateful to have Little Bridge House in our lives.”