‘Full term but sick’: Bliss Charity explains the hidden & complex journeys of babies born sick

February 11, 2021Information, Real life

My 1st Years is proud to support Bliss, the charity for babies born premature and sick.

When Bliss was founded in 1979, the charity set out “to support the life of babies in distress at birth”. Since their foundation, Bliss has sought to deliver this for all babies admitted to neonatal care, whether they were born prematurely or at full term. Nevertheless, the common public perception of neonatal care is often something that only premature babies need; many people are unaware that many babies born full term also require neonatal care and support. 

To raise awareness for those babies born full term but sick, Bliss ran a survey in late 2020 to encourage parents to share their experience of neonatal care. 

From more than 500 responses, two points were clear:

  1. Every neonatal journey is different
  2. Parents of full term babies who need neonatal care need better support, whatever their journey looks like.

A baby born full-term may need neonatal care for many reasons, these include: 

  • Respiratory distress 
  • Jaundice
  • Sepsis
  • Trauma or injury during birth.

In some cases, parents may be aware of certain medical conditions before birth; however for most, their baby’s arrival on the neonatal unit is unexpected and puts these families through a rollercoaster of emotions, no matter how long their stay. 

Almost 70% of the parents who answered Bliss’ survey felt that their experience on the neonatal unit differed to the experiences of families with premature babies. Many felt out of place or that they didn’t ‘belong’ on the unit. Here, these parents of babies born full-term but sick parents were surrounded by much smaller, more vulnerable-looking babies and the support and information available to them focused primarily on prematurity. Struggling to relate to the experiences of the other families they met and without a supportive community around them, parents often report feeling ‘invisible’ during this difficult time. 

This experience is in contrast to the reality of the situation, where in fact just over 60 per cent of babies admitted to neonatal care in the UK are born full-term, at 37 weeks’ gestation or above. Although some of these babies will only spend a few days on the unit, they still require the same specialist care as a baby born prematurely and all of their parents deserve to have their practical and emotional needs met, no matter when their baby was born. 

“I just felt really guilty about being on the ward. You associate neonatal units with premature babies and not full term. I felt like we were taking a space that could have been for a premature baby.”

Of those who answered Bliss’ survey, around half reported that their experiences in neonatal care would permanently affect them and their sense of identity as parents. Many described this time during and after their baby’s neonatal stay as a ‘rollercoaster’ of emotions, which included:

  • Isolation
  • Shock
  • Anxiety
  • Love
  • Support
  • Hope.

Sadly, many of these parents didn’t feel that they had access to support services or information specific to their experience, which would help them to manage these feelings. While some found help from Bliss or other support groups, these responses point to a clear gap in the support that is available to new parents, who are left not knowing where to turn. 

“Just because a baby is full term does not mean that they are 100% healthy. There is nothing scarier than having your child in neonatal and having no idea why.”

Bliss is committed to giving all babies in neonatal care the best chance of survival and quality of life, no matter the reason for or length of stay. Parents with babies who require neonatal care can find plenty of helpful information on the Bliss website, and more is added regularly. Bliss is also working with their ambassadors and other organisations to make sure that as much information is accessible as possible for parents whose babies are born full-term but sick. 

The Bliss ‘full term but sick’ campaign is a new annual campaign with objectives to raise awareness of the experiences that these parents go through, to address some of the gaps in the support that is currently available and to make sure that these parents feel well-supported and empowered to play an active role in the care that their babies receive. As part of this, Bliss have developed a new involvement group for parents of full-term sick babies, which will share information and support for parents in similar situations. 

If you have had a neonatal experience with your full term baby, Bliss would love to hear from you. Sharing stories like yours helps Bliss to reach more parents and to show them that they are not alone.

If you’d like to share your story on their social media, in a future issue of Little Bliss or if you have any suggestions for how Bliss can better support parents of full-term babies, please get in touch at media@bliss.org.uk or via their social media channels. 

To get involved and find out more,

use #HiddenNeonatalJourneys across Bliss’ social channels. 

It’s really lonely. And sad. And frightening. And the unknowns are crippling.”