NICU Mothers Struggle With Mental Health – What Needs To Change?

NICU Mothers Struggle With Mental Health - What Needs To Change?

There are no adequate words to describe the mixed emotions a new baby can bring.

When we add to the mix a stay in the NICU (Neonatal Intensive Care Unit), it’s almost impossible to articulate exactly what parents go through.

Extreme lows and extreme highs are mixed in with the typical changes a new baby brings to a family.

Numbers vary, but in the general population of American mothers, about 10-15% experience postpartum depression (PPD), and even more probably suffer from postpartum anxiety.

NICU Mothers Struggle With Mental Health – What Needs To Change?

Among NICU mothers, some studies show upwards of 70% experience PPD, and as many as one in four experience post traumatic stress disorder (PTSD).

If 70% of a population experience a serious medical condition, changes need to be made.

Why Are NICU Mothers Struggling With Mental Health?

My first three births were low risk, out of hospital births, and I had excellent midwifery care. Even in those ideal circumstances, the reality of early motherhood, healing from birth, and fluctuating hormones were quite challenging for me.

The scary but common anxious thoughts, the sleep deprivation, and the pressure to get back to normal life weighed heavily.

After the birth of my fourth son, we were transferred from a birth centre to the NICU and what we thought would be a maternity unit. Instead, just hours after I had given birth, my baby was under the care of people I had never met, and I was placed in a post-surgical unit because no one really knew where else to put me.

Instead of being skin to skin and resting in my own bed, every 3-4 hours, in between my IV antibiotics, I was wheeled back and forth to feed my son. We were both okay – pretty healthy, really – so it shouldn’t have been so bad, right? In fact, my son was one of the healthiest babies there, so why was I so upset?

There was a good reason:

Mothers and babies are biologically wired to be close. We don’t expect our newborns to be hooked to IVs, or oxygen, or beeping monitors.

I was fortunate; we had a very brief stay. Even so, for months after, I grieved over the moments we didn’t have together. Ours was an ‘easy’ NICU stay and yet it stayed with me.

Two years later, after my water broke at just 29 weeks, I found myself on hospital bedrest. I went from normal prenatal visits to maternal fetal medicine consults, haematology, and cardiology. More obstetricians than I could count came in and out of my room during the 12 days before my daughter arrived.

I spent the first few days in a haze, due to a magnesium drip, but I recall a neonatologist coming in to read off a few statistics about my baby’s odds of survival. They were excellent. I was quite far along in terms of prematurity, but it isn’t the information most mothers want to hear, let alone prepare for the worst.

The bedrest and all the worry happened before my baby arrived; that was the easy part. The birth went as expected: a large team; my baby being whisked away; and just a few seconds to snap a picture before being separated for hours.

But at least I was prepared for those things to happen.

What about the mother who has no idea her baby will be whisked away? What about the mother who thought she was low risk but suddenly finds herself in the operating theatre?

Birth trauma alone is an absolutely terrible thing to manage. Birth trauma and a NICU stay are more than most women ever imagine they’ll have to deal with. And after it happens, you’re often left with little support.

An entire team is taking care of your baby. But who is taking care of you?

You are anxious about whether your baby will make it home. And wondering how you’ll manage your visits to the NICU when you have to care for children at home. You’re worried about whether you’ll have a job to return to after needing extended maternity leave.

Who is making sure you’re managing those challenges? Who is checking in on you?

For two weeks I received lots of care, because we needed to make sure the baby was doing okay. When I was about to be discharged, and head home without my baby, the reality hit. No-one really checked in on me.

I was discharged, via phone, by one of the midwives, and a nurse checked my vitals. I signed a few papers, and I prepared to go home and leave my newborn in a completely different town.

The Realities Of NICU Life And Why Mothers Need More Support

NICU nurses are nothing short of miracle workers. Neonatologists perform miracles, too, like getting a line into a vein most people can’t even see. These unsung heroes do so much!

And they care a lot about parents. They know that every night you go home and leave a piece of you behind. They understand you’re scared, and they do their best to reassure you.

But in the NICU they have a clear priority: to make sure your baby gets the best possible care.

NICU life is hard. You’ve barely wiped the sweat from your brow after giving birth and you have to watch your tiny baby struggle to adjust outside your womb.

That alone can send anyone – even the strongest and the most educated person – into a hard place, in terms of mental health.

Your friends might check in, to ask how you are. And often people look for the ‘silver lining’ and tell you to “enjoy the rest while you can!”

What they don’t see is what happens when you go home, and set a million alarms to pump throughout the night. They don’t see how you struggle with insomnia because your body is wired to be with a warm baby and can’t settle to sleep alone. Neither do they see you calling the NICU for an update, because you’re worried about whether or not your baby coded overnight.

When you’re meant to be settled at home in bed with your baby, you’re driving back and forth to the hospital, and popping painkillers to dull the cramping you have from not resting enough.

You live on protein bars and fast food, rather than being given home cooked meals while you’re curled up on the couch admiring your new baby.

These are the hard realities, and the reasons NICU mothers struggle with mental health. It isn’t because NICU nurses and doctors aren’t doing enough; they can’t really do more while caring for these fragile babies.

But someone can. The difficulty lies in figuring out who that someone is.

Who can you tell, when you’re too scared to call your baby by her name? And when it’s easier to say ‘the baby’ than ‘my baby’? Who can you tell, when you feel uncomfortable to hear someone call her your daughter, because you’ve detached, out of fear?

Who can help mothers through these struggles?

How Can We Offer Better Support To NICU Mothers?

Every hospital is unique. Larger facilities often have social and psychological supports in place, but how easy is it to access them? Smaller community hospitals might be lacking in adequate support services.

Some hospitals have already begun to implement new ways to support mothers and families during this traumatic time. There are many hurdles, but if more of these support systems were in place, we might see a lower incidence in PPD after NICU stays, or at least better management of the condition.

Some pioneering NICUs have:

  • NICU level care provided in room with the mother. This reduces separation, increases bonding, and makes it easier for parents to be involved in their babies’ care.
  • Organisations from outside the hospital providing care packages, listening sessions and peer support groups. There are many hurdles to clear when allowing outside organisations into a hospital, but when they’re overcome, this approach benefits parents and helps hospitals meet their patients’ needs. Many of these organisations, such as Today Is A Good Day, were started by former NICU families.
  • Specialised psychologists or psychiatrists available to NICU parents. In smaller facilities or specialised children’s hospitals, when determining who can provide care for whom, the lines can become blurred. But NICU units who have dedicated professionals for parents might see improved outcomes.
  • A dedicated social worker to help parents navigate the logistics of having a child in the NICU. Many parents face financial hardships or insurance difficulties and having someone to explain available services can reduce their stress. Many facilities have programs that offer parking vouchers, meal vouchers, notes for work, etc. but without a dedicated social worker, most parents aren’t made aware these programs exist.

What Role Do Midwives And Doctors Have In A Mother’s Mental Health?

Apart from NICU stays, other factors contribute to the perinatal mood crisis. Postpartum mothers often tend to fall between the cracks. Many are discharged 1-5 days after giving birth, and might not see their maternity care providers again until the 6 weeks postpartum visit.

A lot can happen during that time, including the onset of PPD.

There has been a gradual raising of awareness, and the  American Congress of Obstetrics and Gynecology (ACOG) recently called for maternity care providers to see every new mother within 2-3 weeks of giving birth, rather than at 6 weeks.

The reality of midwives or obstetricians being unable to catch PPD early, or to support mothers, is more a symptom of the state of our maternity care than an act of negligence. Many providers have large patient loads, difficult hours, and quite a lot to manage. Squeezing in more postpartum visits, without additional insurance or reimbursement, is a challenge. That, of course, is a whole new topic.

In an ideal world, whether they stay in the NICU or not, newly postpartum mothers would be seen a few days after giving birth, and then weekly, until they’re discharged from care at about 6-8 weeks postpartum.

This happens in some countries, where there are far better maternal and infant outcomes than in the US, where the practice is not commonplace. Where midwifery-led models of care are prevalent, a new mothers is often seen by her midwife the day after giving birth and then frequently for the first 1-2 weeks.

My maternity care provider has a scheduled one week visit. It was only when more of my friends had their babies I realised this wasn’t the norm for all practices. Even with a one week visit – with or without an NICU stay – the early weeks of motherhood are quite challenging.

There’s no simple solution for the maternity mental health crisis, but we’re taking a positive step forward by acknowledging the problem.

If we continue to create awareness, hospitals and providers will be pushed to make positive changes, and move towards more support and care for mental health.

For NICU parents, support is vital. Many NICU graduates go home needing weeks, months or even years of special care and support. If NICU parents don’t have adequate care before discharge, the transition home and the years that follow will be especially challenging.

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Maria Silver Pyanov is a mama of four energetic boys and one unique little girl. She is also a doula and childbirth educator. She's an advocate for birth options, and adequate prenatal care and support. She believes in the importance of rebuilding the village so no parent feels unsupported.

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