Surviving the Neonatal Intensive Care Unit:
a mother's story

The first time I saw my son was as I was leaving the hospital where he was born, to be taken by ambulance to a hospital that could provide him with neonatal intensive care. He was born at just 26 weeks after a very quick labour caused by septicaemia. During the labour, the midwife had been unable to find any heartbeat for him but he was born alive, with Apgar scores of 6 and 8.

I saw him when he was two hours old. He was lying in an incubator in a quiet semi darkened room. He was breathing on his own and he opened one eye to look at me. I was exhausted, and I knew he was too, but I felt sure we'd both survive this terrible beginning to life, that we'd get through it somehow and it would be OK. I felt we were still connected.

The next time I saw him was after he'd been taken to the NICU by the Neonatal Emergency Transport Service. He was about 5 hours old and lay naked on an open crib under very bright lights. He had been intubated and had splints to hold in IVs on both arms and one of his legs, and other monitoring equipment attached. The unit was noisy and there seemed to be a great deal of activity going on. He looked very distressed to me. I sensed he was awake but he didn't respond to my voice and I was too frightened to touch him.

Everything changed at that point. I lost my baby and he lost his mother. It grieved me terribly that I couldn't do anything to comfort him or make him feel safe. His environment looked inhuman, and I could tell he was suffering, despite apparently efficient clinical care. It seems a greater miracle to me now that he survived the NICU than that he survived his birth and first few hours.

For the next few weeks I continued to function without much feeling. I felt like the walking dead, and nothing could rouse me, not my two year old daughter who needed me and not even the sight of my little son. At the same time, everyone who visited told me how well I was coping.

I was reminded of this strange state of mind recently when I saw a picture on the cover of The Age weekend magazine. The photo was of a group of children from a children's home in the early 60s. They looked healthy and cared for, they didn't look frightened or anxious - but something vital was missing from their faces. When I read the accompanying article, I realised what that look meant (although I think I recognized it anyway).

Children and babies crave the reassurance of physical touch from their mothers, or someone who can fulfil that role. Without it they can grow and be healthy but something vital is missing. In the same way, mothers crave intimacy with their newborn babies. When that isn't possible, because the baby is on life support, a very primal process is arrested.

I recently heard this state of mind referred to as an "autistic" or "non-living" space. That makes sense to me. I wasn't really alive while I couldn't hold my baby. I can't imagine how it was for him.

The time passed, my son had many setbacks but began to thrive after passing the 2000g mark. We both loved kangaroo care and once he could cope with it, I learned to massage him. We hardly left the house in the first year at home, and if going out was unavoidable, I carried him in a sling against my body.

My son's premature birth almost killed us but it didn't, in the long run, stop us from bonding with a fierce passion. What I now find very difficult to live with is the knowledge that he suffered more than was necessary. In the NICU he wasn't recognised as a fully sensate little being - he had no developmental care, no pain relief, no non-medical comfort of any kind. I knew that at the time but was so disabled by the whole situation I couldn't do a thing.

I think about half the NICUs in Australia now have developmental care protocols, I know a couple have progressed to formal NIDCAP training. I'm not sure how many NICUs routinely use pain relief for major interventions, including intubation and eye exams.

Recognising the premature baby's humanity, their emotional and psychological needs is absolutely as important as saving their lives. The NICU needs to be as kind as possible, not just for the babies but for the grieving hearts of the parents who love them .

© 2000 Anne Casey