A Parent’s Pain: 1 in 5 Preemie Parents Consider Committing Suicide

By Bri Ziganti

preemie parents consider committing suicide

New study shows nearly 1 in 5 preemie parents consider committing suicide in the UK.

The 2016 report on parent mental health was published by Little Miracles UK, a nonprofit advocate group for preemie awareness, parental support, and charitable donations direct to preemie families.  Released earlier this month, the study gathered information from 338 parents of premature children in the United Kingdom from to.  Their findings?  Bleak.  Almost 1 in 5 preemie parents consider committing suicide due to their child’s premature birth or resulting complications and the undue, nearly unbearable stress it causes preemie families.

Why Do So Many Preemie Parents Consider Committing Suicide?

While this information is upsetting and thoroughly unacceptable, it’s not a shocking statistic.  Parents of premature children are ten times more likely to suffer from post-birth depression than parents of full-term babies, culminating in about 40 percent of all preemie mothers experiencing postnatal depression.  When you are dealing with the aftermath of early birth, sudden time off work (or juggling work versus NICU visits), and a sick child who might not come home at the end of treatment, it’s not surprising that preemie parents have a difficult time coping.

Even if their baby is receiving the absolute best care possible, watching their child struggle is still, understandably, a nightmare for most preemie parents.  Many parents feel helpless in the face of such a thing, and don’t know where to turn for support.

Marsha Davis, founding CEO of Little Miracles UK and a mother to four preemies, summarizes the issue.  “The main focus of the units is rightly on the babies.  And that is where it should remain.  However, giving birth to a premature or sick baby can be devastating; a scary, lonely and painful experience.  Mentally crushing. From my personal experience I found mental health support to lacking to the point of non-existent,” she wrote in a moving Forward to the study.

Indeed, while no one can argue that neonatal nurses, doctors, and specialists should shift their already-strained focus from treating preemies, hospitals need to set aside additional staff and resources to address parental care and drastically reduce how many preemie parents consider committing suicide.

“The best possible outcome for any NICU is for the baby to leave in the best possible health, with parents who in the best possible frame of mind to care for them,” Davis continued.

The survey found this was a far more prevalent issue than previously thought.  95 percent of these parents said they were not offered any mental health support while their child was in the NICU.  One reason for this might be because 60 percent of respondents said they were hesitant to ask for help or admit they weren’t doing fine.  A full half of participants claimed they were too scared to say anything because they didn’t want to be seen as an unfit parent and have their child taken away.

Perhaps the most heartbreaking response of all was that 40 percent of parents surveyed felt they could not even talk to their own partner about their feelings.  One woman stated that, “I was told to stop moaning and that I’d be a rubbish mother if I couldn’t cope with things now.”

Another said she couldn’t confide in her partner because she felt “I needed to be the perfect mother.  I had ‘failed’ my baby during pregnancy and I had to be perfect to make up for it.”

 Is this a Common Problem in Western Medicine?

Although this data was collected in the UK, not the US, it points to a disturbing trend in Western medicine.   Considering government-funded post-natal care is far more extensive and accepted in the UK than it is in America, it’s safe to say that this issue is just as bad across the pond.  In fact, it’s not a stretch to imagine than these numbers would be even worse in the United States.

Mental health support has never really been considered a legitimate need by most employers, insurance providers, or even doctors.  American’s lax “deal-with-it” attitude towards mental illnesses like depression and anxiety is highly discouraging considering that suicide is the 10th leading cause of death in the United States today.

In fact, according to the National Alliance on Mental Illness, or NAMI, about 1 in 5 adults in the U.S. (which comes to 43.8 million), suffer from a mental illness in a given year.  16 million will experience at least one major depressive episode in a calendar year, while 18 percent suffered from a serious anxiety disorder like PTSD.  Yet, not even half of adults with a diagnosed illness received significant medical attention in 2015.

One of the biggest barriers to those seeking mental health treatment were, surprisingly, friends and family:

“I felt pressure to be positive and happy because my girls were alive and doing well,” said one parent.

“They didn’t seem to understand how serious it was.  Kept being told how so and so baby was earlier or sicker.  When given congratulation cards how can you explain that you don’t feel like celebrating?” asked another.

“No one understands what it is like to go through a 5 day labor then emergency c section to a 25 week old baby,” one said.

“Whilst in hospital I had no contact with anyone really and by the time we came home everyone thought we should be over it as he was ok now,” admitted one respondent.

“My mum called my youngest a live miscarriage,” a parent said.

While most people mean well, many respondents said their parents, relatives, and friends just didn’t know how to offer them the right kind of support, or made things worse by trivializing what they had just gone through.  Preemie parents often feel alone and isolated, because no one they know outside of the NICU can relate to their experiences.  It’s no wonder many preemie parents consider committing suicide when they are under a constant refrain of their loved ones denying their feelings.

Comprehending the true weight of premature birth is not an easy thing.  That said, those who take the tack of “just get over it” need to understand the full consequences of untreated mental illness on society as a whole.  People who have a mental illness are far more likely to suffer from other chronic conditions and will die an average of 25 years — a whole quarter century!!! — sooner than their peers.  Treatment for these illnesses shouldn’t be looked at as an unnecessary expense or pandering to a weakness, but an absolute necessity.

No matter what your exposure to the NICU is or what your beliefs are about mental illness, one thing is painfully, worryingly clear- parental coping support and mental health are an oft-overlooked issue during NICU treatment.

“With almost 1 in 5 parents saying that they have considered suicide, this isn’t a small issue that can be ignored.  People need to act and act now,” Davis urged.

Nations like the UK and the US provide some of the best neonatal care in the world, saving thousands of children that would have never survived their early birth on their own.  It’s undeniable that the doctors and nurses who work in the NICU are fantastically brave and compassionate professionals.  But it’s also very apparent that more attention needs to be given to the families of preemies.  Caregivers need to find a way to bridge the distance between infant medical provider and parental advocate, as these parents will soon be tasked with the monumental undertaking of nurturing these tiny patients after they’ve left the NICU.

 Where Can I Get Support?

If you are a preemie parent suffering from depression, PTSD, PPD, or are simply overwhelmed with the incredible burden your family is carrying, you are not alone and there are resources of support available to you.  Don’t believe that you need to “be strong in silence”– talk to your doctor, reach out to your personal network, and check out these completely free, long-standing parental groups that offer real understanding and comfort during your time of need:

PreemieWorld: for community and collaboration among preemie parents and NICU professionals

The Beautiful Scar Project: for grieving families of infants who passed away from miscarriage, stillbirth, or early birth complications

Lukas’ Fund: for families working through end-of-life-care decisions for their children

Miracle Babies: for financial assistance, supportive services, and education

Hope Line: for finding the best-fit support services in your area and a live suicide-prevention online chat

Post-Partum-Depression Support Group: for parents who want access to a simple, online support group community

If you know and love someone affected by preemie birth, consider signing Little Miracles UK’s petition to provide mental health support for all parents of premature and sick babies in the UK.

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