A life may last just for a moment, but that moment can last a lifetime in our memories.
At Naomi House & Jacksplace we provide a range of care to support children, young adults and their families from birth through to end of life. Now, with the expansion of our neonatal service, we will be able to offer even more care and support to very young babies and their families.
Neonatal care specifically refers to children within the first 28 days of life, and often includes those born prematurely.
Now, following the expansion of our neonatal service, we can reach families who could benefit from our care much earlier in their journey, meaning we are there for families throughout the pregnancy, birth and beyond.
This will enable us to help families with seriously ill children make the most of their precious time together, and ensure plans are in place for the care of the child after birth. Tragically, in many cases, the child we are caring for may only have a few brief moments of life before parents have to say their goodbyes.
Neonatal Nurse, Lisa Leppard, works with families throughout their pregnancy and then, after the birth, the baby and family can come to Naomi House where we assist in the baby’s care and in making memories, such as making hand or foot prints or something as simple as going for a family walk.
When a baby dies they can stay at the hospice surrounded by loved ones while we provide assistance with practical arrangements around the funeral and registration of death, and offer ongoing bereavement and sibling support as required.
Neonatal Nurse Specialist, Lisa, told us:
It is all about giving families options. When a child is diagnosed with a serious medical condition before birth, they assume their only choice is to opt for a termination. Our neonatal service allows families to carry a baby to term, if that is their choice, and spend time together after that child’s birth. All too often that time is extremely limited, but being able to cuddle, read stories or take some family photos together in a non-clinical and supportive environment is surely an option that should be available to families at such a difficult time.
Lisa supports many families, and Adam and Jessica Roach shared with us how she helped them.
When Jessica was 13 weeks pregnant, the couple found out that their baby had trisomy 18 (also known as Edwards’ syndrome). Trisomy 18 is a genetic disorder caused by the presence of an extra 18th chromosome. 90-95% of babies born in the UK don’t survive to term and only 10% will reach their first birthday.
Jessica and Adam decided they wanted the opportunity to see their baby alive. Lisa supported the family throughout their pregnancy to carry their baby to term and spend time with him after he was born.
Lisa was a breath of fresh air and positivity in an otherwise feeling of pure gut wrenching sadness. She gave us extra hope and made the whole thing seem bearable. She treated the symptoms, not the syndrome, which was hugely important to us as we wanted the opportunity to see our baby alive. We knew we’d have to bury our child and say goodbye at some stage, but we wanted the chance to see him alive.
Baby Hector was born 10 weeks early via C-section on 2 October 2018.
“Because our time was short with Hector we didn’t want to put him through the pain and suffering of incubation. We wanted him to feel love and comfort and we wanted to feel close to him. With the support of the nurses, we held him and had skin to skin time. Then, when we laid him down on Jessica’s chest, he opened his eyes. It was amazing. It was so special to be able to look into his eyes.”
At just 3 hours 4 minutes old, Hector passed away in the comforting arms of his mum and dad.
“Thanks to Lisa and Naomi House, we were able to take our little boy home for a night. Then, the following day, Lisa arranged for us to go to the Butterfly room at Naomi House.
From the moment we got to Naomi House we felt we were joining another loving family. It felt like Hector was at home. He was in the next best place than our arms.