Blog Headlines: 

NICU Parents need help too you know

Monday, 7 November 2016  |  Mummy and Little Me

Mummy and Little Me- NICU Parents need help too you know.

I have not been shy about how much I struggled being a NICU Mum. I fought with denial, anger, resentment and longed for my start to motherhood to be different. I wished it to be normal that they had made a horrible mistake about Elijah’s diagnosis, they mixed him up with another baby and he would be brought back to me in my room. I was wrong this didn’t happen. Elijah was born with a life-threatening CHD, also suffered a Neo Natal Stroke. Elijah had open heart surgery down at Great Ormond Street when he was 6 months old. He is a happy and healthy little 2-year-old driving me up the wall most days! I would like to say; this is where I got my fairy-tale motherhood start over. You would be wrong as it would now be my turn to be ill. But not physically, it was mentally. After 18 months of not being able to cope, even after we returned from the hospital I was diagnosed with Post Traumatic Stress Disorder.

You could look back and say with what I had to face, of course it would leave its mark. But what I also hold responsible for this is the lack of mental health care there is available for NICU parents. The Toolkit for high-quality neonatal standards, which sets out what neonatal units should be providing to run a safe neonatal service, sate that all parents should have access to psychological support, including a trained counsellor. This should be available without delay from the time their baby is admitted. However, the Bliss baby report: hanging in the balance found that 41 per cent of neonatal units said parents had no access to a trained mental health worker; and 30 per cent of units could provide no access to any psychological support at all. Research has shown that parents whose baby is admitted to neonatal care are much more likely to experience mental health problems than the general new parent population, with up to 40 per cent of mothers of premature and sick babies affected by postnatal depression soon after birth.

I believe my condition could have been avoided if the support and access was there for NICU parents.  Amanda MacMillen said; ‘Parents of babies in the NICU may at increased risk for mood disorders.’ Disorders such as, anxiety, depression, Post-Traumatic Stress Disorder. A 2015 study by Diane Hodditch of 113 new mothers in NICU with babies a shocking 42% showed symptoms of Post Natal Depression, and 30% showed signs of Post-Traumatic Stress Disorder.  So; in 113 mothers, 72% showed signs of mental illness. If we know this information why are measures not being put into place to prevent this? Many studies have had recommendations that there should be a trained mental health worker on site and accessible to each NICU parent. This should be done on admission, and discharge with continuing aftercare.

There is currently a petition calling for change, created by Little Miracles whom I am helping the details can be found; It is calling for;

1) Funding/resources for mental health support for all neonatal units in the UK

(2) Mental health screening for all parents of premature and sick babies.

(3) A trained mental health worker e.g. a counsellor, assigned to all neonatal units

(4) After leaving hospital; care and professional support for as long as it is needed

(5) Provision for peer-to-peer support, or similar, for these parents

One in nine babies is born needing neonatal care in England, that’s one in nine families that need care too. It is not just your baby in NICU, you are in there with them, and it takes its toll. There is a reason why the statistics are so high for mental illness when you have had a baby in NICU. It is one of the most anxious and traumatic times of your life. If I am not wrong, after most traumatic events or incidents, isn’t counselling on offer? So why is the mental health of the NICU parent less of a priority? 

With certain measures put into place I believe the level of NICU parents suffering a mental illness would decrease.  A ward manager at a local neonatal unit advised in the 2015 report, ‘Psychological support for parents is currently being prevented due to lack of funding.’

Once you have been discharged from the NICU, people believe it ends there. However, you can’t come to terms with what has happened. The aftercare is non-existent and the health visitors/ midwives do not have this expertise. I have not been checked up by the Health Visitor since Elijah has had his operation and he is considered a ‘priority’.

I slipped through the cracks of the NICU mental health care, I am sure I am still on the waiting list for counselling, again considered a priority and after much chasing nothing came to fruition. Mental illness is a serious matter with 1 in 4 being affected. But when out of 113 mothers over 70% were affected the stakes are that much higher. So; I ask, if I can slip through how many others are? How many others didn’t get help or the support they needed after this traumatic time of their lives? We may be NICU parents but we deserve help too.