As the Post continues to mark Derian House’s 25th anniversary, NATALIE WALKER finds out more about the launch of its new neonatal service which supports family from the very beginning of diagnosis.
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Having a baby with life limiting conditions is an emotional and stressful time.
There may be parents who have gone through a pregnancy with all the hopes and expectations of any other couple waiting for their little one to arrive, but were given the devastating news their child has a potentially life threatening condition, and their future looks very uncertain.
For families who are facing such overwhelming odds, the Derian House team aims to provide a new service which will provide support for parents and their babies who are struggling to deal with the effects of prematurity, complex issues diagnosed either in utero or at birth, and birth complications.
The service will be led by a Neonatal Specialist Nurse, working with a team of clinicians provide a service tailored to the individual needs of babies and their families.
Penny Davis, neonatal service lead, said: “For these babies and their parents, instead of having the time to enjoy their first few days together, parents worry about how their baby will be perceived and the fact that they are often unable to establish a regular feeding pattern.
“In many cases, particularly when this is their first baby, parents are in total shock and denial, fearful for the future, and the uncertainty both practical and emotional that lies ahead. They desperately want their world to be perfect, while the reality is that they are faced with not knowing whether their baby is going to have complex needs, or even if their baby will survive.
“As a means of providing maximum support, the Neonatal Specialist Nurse will liaise with the family at the earliest opportunity, whether during the antenatal period, thus supporting the mother from the moment of diagnosis until birth, and/or in the immediate period following delivery.
“This one-to-one liaison with the family will continue once the parents and baby are discharged from hospital following delivery.
“At a time of immense uncertainty for the new parents, the training and advice from the Neonatal Specialist Nurse will provide them with, not only the best possible advice, but also a sense of security in caring for their baby.
“The nurse will also open up liaison with specific support agencies, who in association with Derian House, are best placed to provide a spectrum of support critical to the needs of both parents and baby, and the family as a whole.”
A regional neonatal care network has been created to facilitate referrals of life threatened and life limited new born children to hospices throughout the North West.
This network will provide the Neonatal Specialist Nurse with a focussed reference point to local and regional delivery suites and neonatal units to ensure Derian House is able to provide the best possible care for the whole family at the earliest opportunity.
Penny added: “A prime example of the crucial need for a service such as this is demonstrated from another children’s hospice whereby the antenatal diagnosis of a complex condition meant that the baby would not survive long after birth, or could potentially be stillborn.
“The neonatal team was able to work with the parents to plan for the baby’s birth and how they wanted their child to be cared for.
“The hospice neonatal nurse was present at delivery, which was a planned caesarean section, and were then able to arrange for the baby to be transferred to the hospice to be cared for, and ultimately, to rest there.”
A partnership of care between the Neonatal Specialist Nurse and the Derian House play specialist will provide individual play sessions with the child, along with specific advice on sensory development, whether in the home, via Derian at Home, or within the dedicated baby and toddler play group at Derian House.
There was nothing to suggest anything untoward that would give rise to cause for concern throughout Charlotte’s pregnancy.
Oliver was born at full term after what was seen as a completely routine pregnancy.
But Charlotte’s world turned upside down when complications in delivery resulted in Oliver becoming starved of oxygen causing catastrophic birth injuries including hypoxic ischaemic encephalopathy, cerebral palsy, epilepsy and numerous other medical complications.
The 21-year-old said: “As a single, young parent still living at home with my mother and step dad, neither of whom could drive, my options were extremely limited.
“I struggled with the challenges, not only of being a new mother, but the mother of a child with immensely complex medical issues.
“Once we were discharged from the Neonatal Intensive Care Unit, I felt overwhelmed with the responsibility of caring for an incredibly fragile baby particularly with limited resources available.
“I didn’t feel I could go to regular mother and baby groups as I felt people stared at us. I would not even take him to be weighed. Instead, community health visitors did this at home. I became very isolated.”
Derian House became involved with Oliver when he was four months old, providing support for Charlotte with some in house respite care, but predominantly in the form of specialist care from the Derian at Home team along with high level input from the Family Support Team.
However, Charlotte’s only connection with other mums was essentially via the internet.
Oliver received very specific input from numerous professionals, including occupational therapists, physiotherapists, paediatricians, community teams and speech and language therapists.
But Charlotte never had the opportunity to interact with other parents in a similar situation to her, who, like her, struggled with the day to day challenges of having a child with a complex medical condition.
Oliver died early in 2016 aged two years and four months. He rested at Derian House until the day of his funeral, with Charlotte and her wider family receiving high level support.
Penny said: “Oliver and Charlotte’s story is just one example of an all too familiar situation in which parents of children with potentially life threatening conditions find themselves.
“The enhanced neonatal care service would have provided Charlotte with a dedicated service which would have given her and Oliver the clinical support they needed. It would also give the means to access the skills she required to care for Oliver on a day to day basis, and with other mothers in the same situation, providing support.
“For so many of these parents, their first steps towards setting out on their journey with their new baby is a world away from their original expectations. “This level of specialised neonatal care is crucial in providing them, not only with the emotional support they need to help their baby thrive and develop, but with practical help and specific knowledge.
“As their baby grows, there will a wide range of play and sensory experiences available to them, including baby massage, sign and sing, and developmentally appropriate play, and where there are siblings in the family, play facilities fit with their requirements, thus meeting the needs of the whole family.
“There will no doubt be many others like Charlotte for whom a future without specific support for their situation will leave them feeling isolated and marginalised.
“Through its enhanced neonatal care service, Derian House will provide parents with what is essentially a “stepping stone” of information, emotional support and practical knowledge which will give them the confidence to move forward as a family on the first steps of the next stage in their journey in attaining a sense of progress and normality for them and their baby.”