A couple from Bamber Bridge, who lost their “miracle” baby girl when she was just almost 16 weeks old, have funded new kit for the Royal Preston Hospital’s Sharoe Green Maternity Unit NICU (Neo Natal Intensive Care Unit) through a £1,900 donation to mums and babies charity Baby Beat in celebration of their daughter’s all too short life.
David and Lisa Nuttall lost their daughter Sienna on 9th March this year. Sienna was a much longed for baby that the couple, who have been together for a decade, had tried for over many years to be a sibling to Lisa’s 15-year-old daughter.
At 36 weeks into the pregnancy, David, a driver for bus company Stagecoach, and Lisa were given the devasting news that Sienna had a very rare inherited genetic condition called recessive congenital titinopathy.
Lisa, a teaching assistant at a local primary school, explained: “The condition causes severe muscle weakness, respiratory issues and rigid stiff joints with limited range of motion. Sienna was incredibly unlucky to inherit recessive congenital titinopathy as in most cases, both parents have to carry the mutated gene in order for the condition to be passed on to their child.
“In our case, Sienna, who was our miracle baby because we had been trying for a child for so long, inherited one variant from me and developed a new mutation herself giving her two faulty copies.”
Lisa added: “I had already given birth to a healthy baby and had no idea I carried the gene until we underwent genetic screening later into my pregnancy with Sienna. At our 20 weeks scan, Sienna was diagnosed with talipes or clubfoot, which led to the further testing. As the pregnancy developed, I also began to notice that Sienna didn’t seem to move much in the womb.”
Lisa delivered Sienna by C-section. Sienna was immediately taken to NICU with doctors unsure how severely Sienna was affected by her condition. Apart from a very short stay at Liverpool’s Alder Hey Children’s Hospital, where doctors attempted to take Sienna off ventilation, Sienna spent her entire life in NICU, where she became very popular, with her parents and other family members with her every day.
David said: “NICU’s nurses and doctors, even those that weren’t directly involved in Sienna’s care, would all come and visit Sienna. They called it their ‘Sienna fix’ as Sienna was very alert and responsive. NICU was her home and the staff were amazing. They did everything at a pace that suited Sienna, bending over backwards to care for her and make her as comfortable as possible.
“Sienna had a special fluidised mattress that moulded to the exact shape of her body to support her and keep her comfortable. The mattress is especially for babies with reduced movement and with the donations from family and friends that we received following Sienna’s birth and her funeral, we have been able to buy the unit two more of these special mattresses plus five fluidised positioning pads and there are still funds left over for additional equipment.”
Joanna Allitt, fundraising manager for Baby Beat, said: “Our hearts and condolences go out to David and Lisa for their loss of Sienna. They have been through an almost unimaginable trauma and for them to support Baby Beat and NICU in this way is testament to them as selfless, loving people.
“We are extremely grateful to David and Lisa for their funding of the additional fluidised mattresses and pads. They will make a huge difference to the lives of pre-term and unwell babies as the pads and mattresses support the body and limbs in alignment to protect baby’s joints, skin and brain growth and development. Despite this, they are above the NHS’ standard neonatal provision.”
To support the couple’s Baby Beat fundraising in Sienna’s name visit https://siennanuttall.muchloved.com/