NICU Loneliness and Guilt – Do They Ever Truly go Away?

When you get pregnant loneliness and overwhelming guilt aren’t emotions that you think you are going to feel. You are filled with dreams and hopes and expectations just like anyone else – you feel part of a community. But when you have a premature baby loneliness and guilt are just some of the many emotions that you feel. 

Like everyone else I never thought it would happen to me. I vividly remember sitting on the sofa telling my husband that a woman I was in school with had her baby at 27 weeks. That was like me going into labour in a week – can you imagine

What I now realise is that I am that woman – referred to by others so flippantly without realising the magnitude of that persons experience, as exactly a week later I went into labour. A marginal placental abruption resulted in my son being born weighing in at 2lb 3.\

Guilt is one of the very first emotions you feel when you have a premature baby, and not just a small amount, an overwhelming, crushing guilt. The million and one things that you did that could have caused your premature labour run through your mind. Never in my life have I been so surrounded by caring people and yet felt so extremely lonely. 

For the first time in my relationship with my husband I felt alone even from him. As one now lifelong NICU friend once said to me – not even our parents can understand. They say they worried about us but they never had to worry whether we would walk or talk or even live. So you feel lonely even from your family.

After 9 long weeks spent in two different hospitals we were able to bring Xander home. However, even after NICU life has ended and you are back into some sort of normality, every now and again that loneliness will reappear. 

When your friends who carry to full term compare their pregnancies and labours and yet steer clear of asking you about yours – for fear of upsetting you. This takes you back to that lonely place where only people who have been there can relate. Simple things like seeing a woman in her third trimester or attending a baby shower can bring all these feelings flooding back. It doesn’t mean that you aren’t happy for that person, quite the opposite, you are beyond happy that they won’t go through what you went through and yet that loneliness creeps back in.

So do NICU loneliness and guilt ever go away? 

For me it comes and goes but I know I’m still on my healing journey. But with my sons 1st birthday fast approaching I look at him and realise that actually I could never be lonely, not with my warrior by my side. 
Regarding guilt – this is something that I am still working on and that I think I will always be working on. It will live with me forever, easing ever so slightly and then suddenly hitting me when I am trying to sleep. It is something that has eased over time and that I hope will continue to ease. And would I do it all again?

In a heartbeat – it has made me a stronger person, me and my husband closer and given me a new appreciation for life. And most importantly of all it gave me my cariad (my love), my boy. And I’ve realised that I am still part of a community, a wonderful one, just not the one that I expected it to be.

With thanks to Samantha Burvill for sharing her story.