Lauren’s story

Lauren was born on her due date of the 23rd of October 2010. As she was our first child we didn’t really know what to expect. You can read all the books you like, but nothing prepares you fully for the challenges of parenthood. She was beautiful and perfect, and we were so happy to have her.

As her first few weeks went by we settled into our new way of life, and Lauren became a happy and settled baby. It wasn’t until her 12 week injections and check-up that the nurse at our local GP practice noticed her eyes wandering from side to side, and asked the Doctor to have a look at her. Lauren had also been struggling to gain weight, so the Doctor decided she should go to Sheffield Children’s Hospital to be checked over. It was during that assessment that we were told that Lauren’s liver was enlarged, and that further tests would be required. Instantly our world changed. A planned trip to New Zealand to meet her Paternal Grandparents and relations was cancelled, and we began a long road of hospital visits and tests.

There seemed to be so many things that could be wrong with Lauren, but each test came back normal. As time wore on the tests became more invasive, and Lauren still wasn’t gaining any weight.

During one of our stays we met a family who had used Bluebell Wood, and thought that we should check it out. By this stage Lauren wasn’t sleeping well, and her feeding and medication regimes meant that we were tired and stressed. It was around this time that we were told that Lauren’s liver was failing, and that there was little that could be done for her. We still didn’t have a diagnosis, or even an idea of her prognosis. An appointment was set for us to go and visit Bluebell Wood, and to be assessed for accessing the service.

We never made that appointment, as after a lovely holiday in France, Lauren began to deteriorate further. Treatments that were previously effective had stopped working and she began to sleep more. During one admission to Sheffield Children’s Hospital, we had some long and frank discussions with the medical team about Lauren’s treatment, and how best to manage her condition. This is when we met a couple of very special Bluebell Wood staff members who not only put our minds at ease, but facilitated our admission within hours. The sense of relief we felt when walking through the doors for the first time is indescribable…to finally feel supported and cared for was amazing. It was like a home away from home. A place where we could finally function as a family, and where we felt we could ask for help if we needed it.

At first it was hard for us to let go, we had been Lauren’s sole carers for 10 months and it took some time for us to allow the staff to take over some of Lauren’s care. We were both impressed with the dedication and skill of the staff, not only those who cared for Lauren, but the fantastic support staff who made every day we spent there a little easier. Lauren loved being around the other kids, and grew very fond of the food on offer each day (roast potatoes and ice cream were firm favourites).

The time we spent at Bluebell Wood over the last month of her life was so precious. We managed to get some sleep and spend time with Lauren as parents. In the final few days of her life many of our family and friends came to visit and the staff made everyone feel welcome and at ease.

After a weekend filled with visitors and cuddles Lauren quietly passed away in our arms, just two weeks short of her first birthday.

Weeks after her funeral we learnt that she had Mitochondrial DNA Depletion Syndrome, a very rare form of Mitochondrial Disease.

The support we received and continue to have from Bluebell Wood is amazing. The hospice has become part of our lives and we have made a couple of trips back to visit staff and spend some time in the Memory Garden. Recently we took our newborn son, Leo, to meet the staff who have become almost like an extension of our family.

We are fortunate to have a facility like Bluebell Wood to serve our region. It is a real asset to our community and is staffed by wonderful people who dedicate their lives to looking after children with life limiting conditions. Please support them in any way you can…it makes a huge difference to so many people.

Matt & Claire Tranter.