New Report on Life After Neonatal Care

Today The Smallest Things published their 2017 ‘Life After Neonatal Care Report. Read the full Life After NICU Report 2017 here and see below for the executive summary.


The Smallest Things Life after Neonatal Care Report shares the findings of more than 1,600 mothers and is thought to be the largest survey of the needs of children and parents following premature birth in the UK. The report, which includes first-hand accounts from parents, demonstrates the complex nature and often interlinking difficulties families face following premature birth. From maternal mental health, family life, ongoing medical needs, re-admission to hospital and special educational needs, the results clearly outline a lasting journey through which parents struggle to find support.


Maternal Mental Health

  • 63% of mothers report experiencing anxiety following discharge from neonatal care
  • One third of mothers reported feeling isolated following neonatal care.
  • 44% of mothers had flashbacks to their time in neonatal care.
  • 61% of mothers reported feelings of guilt following premature birth.
  • 26% felt that their health visitor understood theirs or their baby’s needs

Ongoing Medical Needs

  • 48% of premature babies were re-admitted to hospital following discharge home from neonatal care.
  • 46% of children have ongoing medical difficulties following premature birth.
  • More than half of parents worried about the long-term outcomes for their child.

 Family Life

  • Only 35% of mums were able to attend mum and baby groups.
  • Nearly half (49%) reported that having a premature baby affected their financial circumstances.
  • 1 in 3 struggled to keep up with social friendships following neonatal care.
  • 14% of mothers were unable to return to work as a result of their child’s health needs.

Special Educational Needs

  • 44% reported that their school age child had additional learning needs.
  • More than half of those had, or were applying for an Education, Health, Care Plan

Conclusions and Recommendations

The report concludes that there is an urgent need for continuity of care from hospital to home and that additional training must be made available to community practitioners in order to identify and support the specific needs of premature babies and their parents. A running theme throughout the report is the lack of awareness of the lasting journey of prematurity and the far reaching impact upon maternal mental health and family life.

Key recommendations include that all NICU parents must have access to timely and tailored psychological support, addressing the often complex mental health needs following discharge from neonatal care. In addition, parents should be encouraged to inform early years and primary school teaching staff of their child’s pre-term birth, supporting early identification of additional learning needs.


5 thoughts on “New Report on Life After Neonatal Care

  1. Philippa

    Would be interesting to see how these figures compare to non-NICU parents. Additionally, education of teachers, doctors and others in the community who can provide support is needed. I’ve never had even a blink of recognition from teachers when I’ve stated that my child was very premature when discussing learning needs, NPR from GPs. However, it is on the tick list for CAMHS, which is helpful when seeking a referral.

    Liked by 1 person

  2. itsamumslife2016

    I feel like my postnatal circumstances are just not accounted for. I’m not even sure where to go to see if any research has been done or to try and help others who may have experienced the same. My baby’s condition was picked up at 20 weeks: possible abdominal cyst. We were seen by the FMU and Great Ormond Street surgeons regularly and I cannot fault them at all. Induced at 37 weeks due to cyst obstructing bowel. Surgery at 36hrs. NICU for 48hrs, ward admission 3 days. Then miraculously discharged and no other complications. She is now 7 yrs old. I didn’t have any post birth midwife care until I got home 6 days post birth. This was mainly because I arrived at the children’s hospital on late Friday evening and their midewife care operates some week days and limited working hrs.
    Unsurprisingly I had postnatal depression.
    So my baby wasn’t premature. Didn’t need extra medical care following surgery and hasn’t any learning needs following her condition. Yet I can’t be the only mother who has experienced this…..
    Advice would be welcome as I would love to share my experience with other mums so they don’t feel so alone.

    Liked by 1 person

    1. The View from Motherhood

      My 39 week baby was in the NICU for 9 days following a planned C-section. I am still experiencing anxiety from our NICU stay. There are other moms out there who have experienced similar situations. You just have to know where to find them. NICU Strong on Facebook is a great resource and group.



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