Full Term February
There’s a common misconception that all babies born needing neonatal care are premature, but 60% are born at full term and sick.
February is Full Term Awareness Month, a chance to raise awareness of babies born full term and sick.
You may never have imagined that your baby would need neonatal care, and it can be difficult to talk to those who haven’t been through the same things as you.
Here at James Hopkins Trust, we provide respite to children that were born both prematurely and full term. All of which are severely disabled and/or have a life-limiting or life-threatening condition.
Here, we tell Cove’s story. One of heartbreak and strength following his traumatic birth and HIE diagnosis.
Cove
Charlie and Jason eagerly anticipated the arrival of their first child, with scans indicating a healthy baby measuring slightly on the larger side. At 41 weeks and 5 days, Charlie went into labour early Monday morning. However, despite 48 hours of labour, their baby remained in situ. Although the baby showed signs of sleepiness on the monitor, no interventions were deemed necessary. On Wednesday evening, during the late stages of labour, it became clear that things were not progressing as expected, and shoulder dystocia was identified. Tragically, shortly after this finding, the monitor detected that their baby no longer had a heartbeat.
Medical professionals worked urgently to deliver the baby, and Cove was born 16 minutes later, lifeless, with his umbilical cord wrapped around his shoulders and neck. Charlie and Jason watched helplessly as the team fought to resuscitate their son. Against all odds, 21 minutes after birth and 16 minutes after losing his heartbeat, Cove’s heart started beating again, though his battle was far from over.
While Cove was being resuscitated, Charlie was undergoing a placenta removal procedure under spinal block, watching on helplessly. She lay there believing the worst. Even after regaining a heartbeat, Cove’s prognosis was uncertain. Doctors warned Charlie and Jason that he might not survive the first hour. If he did, he might not make it through the transfer to Southmead NICU. And even then, him surviving the cooling process, an essential treatment for oxygen-deprived babies, was not guaranteed.
Cove had suffered a severe brain injury due to prolonged oxygen deprivation. He was diagnosed with Grade 3 Hypoxic-Ischemic Encephalopathy (HIE), the most severe form, and doctors were uncertain about his future. After 10 days in Southmead NICU and another 16 days in Gloucester NICU, Charlie and Jason, having taken on much of Cove’s care in the hospital, were determined to bring him home, which was agreed by the hospital. Their initial discussions with professionals had revolved around funeral arrangements and advanced care plans, but their focus quickly shifted to cherishing every moment they had with their son.
Navigating Life with HIE
While still in NICU, a consultant explained that Cove’s brain activity resembled that of a comatose patient. His parents were told he would have profound disabilities, but the true extent of his condition would only become clear over time. The findings of an investigation by the Health Services Safety Investigation Body (HSSIB) added another layer of heartbreak. It was revealed that Cove’s birth complications, including shoulder dystocia, was most likely linked to his size, gestation and prolonged labour. Had different interventions been taken earlier, some of the outcomes may have been preventable. Despite the pain of this revelation, Charlie and Jason chose to focus on advocating for Cove and providing him with the best possible care.
Cove is registered as severely sight-impaired with Cortical Visual Impairment (CVI), meaning his eyes are healthy, but his brain struggles to process visual information. His vision has shown some improvement, as he can now track bold colours and respond to light, but this is inconsistent. He also has hearing loss due to inner ear and auditory pathway damage, a result of HIE. While he wears hearing aids, there are concerns that his brain may not be processing sound effectively.
One of the most debilitating effects of Cove’s condition is dystonia, a neurological disorder causing involuntary muscle contractions. Cove experiences dystonia nearly 90% of the time, severely affecting his daily life. It has already led to significant scoliosis and makes sitting comfortably, playing, and processing his surroundings incredibly difficult. This makes settling Cove when in a crisis, extremely difficult. His parents are hopeful that he may be a candidate for Deep Brain Stimulation (DBS). DBS for dystonia involves implanting fine wires into a place in the brain called the internal pallidum (also known as the Globus Pallidus interna or GPi). A constant electrical pulse is sent through the wire to the brain. This modifies the brain activity and reduces some of the symptoms of dystonia. Should he be eligible and Cove undergoes the surgery, the results would be life changing for Cove and his family.
Cove has never consumed food orally due to an unsafe swallow reflex. He is fed through a Percutaneous Endoscopic Gastrostomy (PEG) tube, ensuring he receives essential nutrients. Despite attempts to encourage a suck-swallow reflex in infancy, it was not successful. He can occasionally have flavour swipes, but even these require immediate suctioning to prevent aspiration.
The Impact on Family Life
Caring for a severely disabled child places immense strain on relationships, and Charlie and Jason were no exception. Sleep deprivation, stress, and differing perspectives led to tension. However, once they processed their experiences and refocused on their shared goal, advocating for Cove, they became stronger.
Charlie had attended antenatal classes during her pregnancy but had never heard of HIE. She recalls feeling relieved upon going into labour, believing that reaching this stage meant everything would be okay. Now, she strongly believes that parents should be educated on potential complications, empowering them to advocate for themselves and their babies during labour. The trauma experienced during Cove’s labour resulted in Charlie feeling like she could not and would not go through it again so it came as a complete surprise to find out Charlie was pregnant when Cove was only months old. Anxiety took over and in order to get by Charlie found herself disassociating from the life growing insider her in a quest to protect herself from further trauma. There were many times during that pregnancy that Charlie doubted herself for having another child since Cove required so much care. Would she be able to meet both children’s needs? However, it could not have been more different. Elowen was born when Cove was 13 months old and having them so close in age has worked out well since as Cove grows and becomes bigger, his needs become more difficult so having them both little at the same time seems easier to manage.
Having a neurotypical child highlighted just how challenging Cove’s life truly is. Simple moments, such as Elowen crying during her c-section was surreal since Cove was 8 weeks old before he had his first little cry, for example. It really put into perspective how much work it takes to take care of Cove from strict routines for medication and feeds to appointments and therapies also as with Elowen, they were and still are able to go with the flow with no need for routines unless they wanted one. This wasn’t just noticed by Charlie and Jason but family too. Charlie remembers how on one particular day, she and Jason were in hospital with Cove and Jason’s sister called to say she didn’t know what to do as she was looking after Elowen, but their dogs needed walking. It didn’t cross her mind that she could pop Elowen into her pram and simply take the dogs for a walk as spontaneous events like that were not possible when caring for Cove since leaving the house took meticulous planning and organisation. The differences in both children became even more noticeable when Elowen was only a couple of weeks old, meeting milestones that Cove had never met, which is a bittersweet feeling.
James Hopkins Trust- A Lifeline for the Family
James Hopkins Trust (JHT) has been an invaluable support system for Cove and his family. Charlie, as Cove’s primary carer while Jason works, receives much-needed respite when Cove spends time at Kites Corner. This allows her to recharge, complete tasks she otherwise couldn’t, and spend one-on-one time with Elowen, all while knowing Cove is safe and well cared for.
Due to Cove’s complex medical needs, family members cannot provide the level of care he requires, making JHT’s services even more vital. James Hopkins Trust also provides cherished family experiences, from Christmas parties to train rides, creating memories that will last a lifetime. The expertise of the Trust’s paediatric nurses has been invaluable, offering fresh perspectives and guidance that help Charlie and Jason navigate Cove’s ever-evolving needs.
Cove receives 1-2-1 care from a specialist paediatric respite nurse during his sessions, ensuring he feels safe and understood. His parents love hearing about his time at Kites Corner, especially moments of purposeful movement, like reaching and grabbing, actions many take for granted but are huge achievements for Cove.
Charlies says ‘We know Cove is life limited (life expectancy up to 13 years old) so it’s important we feel comfortable with Cove being at a particular setting which is exactly what JHT offers us. Cove is a very complex little boy and his prognosis was not great. Despite all his disabilities, the dark days, the constant battles, the constant knockbacks at the beginning (finding out he was deaf, then blind etc) he makes us extremely proud every day. Cove is an absolute miracle and a warrior. We don’t celebrate milestones with Cove, it’s all about the inchstones that he achieves! I absolutely love Cove and his little personality (which might not look much to those that don’t know him) he always touches people’s heart and his story is always worth telling.’
#FullTermFeelings