You stare through the glass, in amongst the wires that seem to be everywhere, is your tiny baby. The beep of the machines is constant, and relentless, and every so often an alarm sounds making your heart beat faster as you jump to your feet to check your baby is ok.

Nurses come and go sometimes opening the glass portholes to attend to your baby’s needs. Every day as you make your way to the unit you wonder and worry what that day will bring. This tiny life that once was inside you is now in the big wide world, but too soon, and now you patiently wait each day while others keep your baby alive.

Having a baby in a neonatal unit is a difficult journey. To give birth and have your baby taken from you sometimes without you even seeing them is so distressing. It may be hours or even days before you can see your baby and for babies born very early, it can be weeks before you may even be able to hold your baby. Suddenly instead of you caring for your new baby, the care is taken over by nurses and doctors. Each day is difficult as you navigate the many challenges of having a premature/sick baby. In some cases every day your baby is battling just to survive. Going home each day without your baby is heartbreaking. This isn’t how it was supposed to be.

It is little surprise then that studies are showing a connection between having a baby in Neonatal and PTSD. In fact, it is thought that up to 70% of mothers may suffer from PTSD following having a baby in neonatal. Whether a stay in neonatal is long or short the emotional effects can be long-lasting.

Plastic boxes

While in Neonatal parents can often go into coping mode. Many parents report feeling intense emotions of sadness, grief, guilt, shame, anger, disbelief and numbness while going through this time. It can be especially difficult when your baby suffers medical setbacks. Having a baby in neonatal may be one of the most stressful times you ever experience.

The main thing parents struggle with is separation from their baby, bonding can be an issue and some feel that their baby doesn’t feel like ‘theirs’. Having to go home each day and leave your baby can have a massive emotional impact.  Feeling a sense of having no control can also be difficult to cope with, parents can feel that they have no say or that they are not involved in caring for their baby.

Being in a constant state of worry and turmoil for days or weeks on end can have a profound effect on emotional well-being. Life on a neonatal unit is constantly up and down, with good and bad days. Parents can feel like their life is on hold and doing normal daily activities becomes virtually impossible. Of course, also many partners find they have to return to work, meaning new mothers are left to visit the unit alone or rely on family and friends for help and support.

Feelings of guilt can be strong. Guilt over the birth, why their baby was born early and if they could have prevented it. Guilt for not being able to be with their baby all the time, especially if there are other children to care for and guilt for feeling exhausted while wanting to do everything they can for their babies.

There is also a sense of loss and grief. Grieving the loss of a wanted birth experience, the early days with a new baby, establishing feeding and intimate time bonding as a family. Also coming to terms with long-term physical or mental complications in their premature baby is devastating and takes time and support.

No wonder PTSD is often a consequence of the neonatal journey.

Going Home

Taking home your baby after any time in a NICU unit is filled with many emotions. Happiness that finally you can take your little one home, as well as relief, is more than words can express. But along with the joy is fear and worry.

After months of being in a unit with staff supporting your baby 24/7, being solely responsible for the care of your baby can be daunting. There has always been someone close by to ask advice and rely on, plus alarms and machines to reassure you all is ok,  but now it just you, scared, worried anxious, parents. Your neonatal baby has lots to adjust to in their new environment called home. There are different sights, sounds, smells and temperatures, and even the lighting is different. Sometimes all these changes can be overwhelming for your baby. This can result in a very unsettled baby and very anxious parents.

If your baby has continuing health issues this too is stressful to manage and adjust to, not only to your baby being home but also the medical needs that your little one has. Emotionally this again can take a heavy toll on you and leave you feeling anxious and overwhelmed. Yes, the neonatal journey doesn’t end when you leave the unit but can continue for many months, years and sometimes a lifetime.

Finding Support

It’s important that if you have/or had a baby in neonatal you can practically access support but definitely emotionally.

Many wonderful organisations provide support including Bliss, Tommy’s and Best Beginnings. Also, ask your unit for any information they may have on support locally. Some units have on-site counselling services for you to access.

When you go home with your baby again ask about what support is available. This will vary in each area, some have outreach programs to support you when your baby is discharged. Others have neonatal nurses who will visit you at home to provide additional support. Some areas run support groups for you to attend to meet other parents who also have had the journey of neonatal. There are also national support groups such as Neomates.

It may however take weeks, even months for you to feel the full impact of what you have been through. Processing the experience of neonatal can take time and often parents report feeling like they suddenly hit a wall months later which can lead to a surfacing of many emotions. Those around you with good intentions may try to help by saying that ‘everything is ok now’ or ‘your baby is healthy and doing well’. If you find that you are struggling with your experience, having feelings of guilt, anger or sadness or feeling you are experiencing symptoms of PTSD then accessing help and support is important.

What can you do?

TALK to someone you feel comfortable with about your feelings such as your GP, Health Visitor or community neonatal nurse.

REACH OUT for support or ask for local support groups. There are also many online support pages for parents of premature babies and talking to others who have been through a similar experience can help greatly.

BE GENTLE with yourself and remember you have been through a very difficult time. Allow yourself to process your time in neonatal. Don’t expect too much of either yourself or your baby. Time bonding with your baby is important.

ASK for help from family and friends even in practical ways. They may not understand your feelings around your time in neonatal with your baby, but they will be eager to help in any way they can.

REMEMBER your feelings are part of processing your experience. You may feel worried, scared and overwhelmed but also anger, grief and loss. Counselling can help you deal with your feelings and help you work through them so that they do not progress to the point where it overwhelms you.

Sometimes having a debrief or birth reflection session after you come home regarding your time in neonatal can help too. This can be arranged with your hospital.

We cannot prevent babies from coming into the world early or the sometimes traumatic events that may surround their birth or their time in neonatal. But, with help and support you can get through neonatal and the months and years that follow taking your beautiful baby home.