Our second baby, our beautiful little boy, arrived in the most frightening of circumstances. Something was wrong– I was just on 39 weeks pregnant, and my usually highly active baby hadn’t moved for several hours. During my pregnancy, I had already spent a lot of time in hospital and under medical supervision as I had been diagnosed as ‘isoimmunised’ (sometimes also known as ‘alloimmunised’) – a rare condition characterised by a blood incompatibility between mother and baby, resulting in an immune response where the mother’s antibodies can cross the placenta and attack her baby’s red blood cells. It can cause the destruction of red blood cells, leading to complications such as anaemia, jaundice and in the worst of cases, heart failure and death. I had a blood test every four weeks to check the titre level (the level of antibodies I was producing) and it had always remained well within the ‘safe zone’. I was sent for monitoring at the hospital, naively expecting to be sent home to rest for the last week of my pregnancy.

There was a lot of discussion amongst the midwives about the “sawtooth” pattern on the monitor display. I didn’t know it then, but typically a sawtooth pattern indicates that the baby has anaemia. Devastatingly, it became clear that the condition that I had been anxiously researching since my GP detected the antibodies and therefore the risk during routine pre-natal testing, had affected our baby. We were living one of the most serious scenarios we had been warned was possible. The thing we feared was happening…

Our little boy was delivered by emergency caesarean in a blur and was a horrifying grey colour – we were crushed when it was confirmed that he had severe Haemolytic Disease of the Newborn (HDN) – he was severely anaemic and severely jaundiced. This little man, who we gave the family names Samuel (“God has heard”) and Felix (“lucky”), was very, very sick. 

I held him for only a few moments before he was whisked away to the hospital’s Special Care Nursery for further testing and assessment. I did not see him again for many hours and only then when he was encased in an enormous incubator for transportation to a tertiary hospital neonatal intensive care unit via a PIPER (Paediatric Infant Perinatal Emergency Retrieval) Ambulance, as the small suburban private hospital where he was born did not have the facilities to treat him. Due to my emergency caesarean, I was told that I was not able to leave hospital and go with Sam. My husband hurriedly gathered what he thought might be needed from the bag of baby items we had packed with such excitement several weeks before and rushed off to be with our son while he was given an exchange transfusion. (An exchange transfusion is a medical procedure whereby the entire blood volume is slowly replaced with donor blood over several hours).

I waited impatiently to be allowed to visit my tiny newborn son. I doggedly expressed breastmilk every three hours and cried alone in my room because I was so frustrated that it was all I could do for my baby in that moment, and I could hear all the other babies in the maternity unit with their mothers.  My wonderful husband, friends and family trekked back and forth between my hospital room and my son’s cot in the NICU (Neonatal Intensive Care Unit) many kilometres away, clutching Eskys filled with my expressed milk and sending me photos and videos of my little love. It was one of the hardest experiences of my life, to be away from my baby when he was so new and so unwell, and I was utterly unable to comfort and help him.

The maternity unit nurses organised for me to briefly leave the hospital to go and visit Sam when he was three days old. They were so sweet; they even organised a packed lunch for me and made jokes about my husband “busting [me] out” when he came to pick me up to drive us to the tertiary hospital NICU. The NICU was a strange and unique environment. It was so dark and quiet, and Sammy was now wearing a little protective eye mask under bright blue lights, with a CPAP tube in his nose and his arms bandaged to keep his medication tubes in. I felt like I shouldn’t touch him. The NICU team encouraged me to feed him using a syringe and helped me to change and lightly dress him. He cried in protest and his little cheeks went the lightest shade of pink – we were delighted just to see colour in his face.

Sam quickly progressed from the NICU to the Special Care Nursery, which was like a different planet. I was able to cuddle him, try to nurse and feed him. His dad got to give him a bottle of expressed milk. It was a louder, more relaxed environment and we started to feel less terrified, beginning to view this experience as something that we needed to get through on the way to our new life as a family of four. It was then back to the Special Care Nursery at the hospital where he was born, and then finally home.

Today, he is a big kid of ten. He is active and busy, an always chatty boy, who loves his family, his hobbies and his friends. Sam does bear some reminders of the grey baby who had a hard start in life and still needs lots of extra-special care; we have faced lots of developmental challenges, struggles and many diagnoses, but we wouldn’t change anything. He is absolutely, wonderfully perfect to us – hilarious and fun, gives the best hugs and makes us proud every day.

In many ways, I see what we have experienced as the making of our family – we have all each developed so much compassion, our perspectives have been broadened and our community expanded to add a richness that wasn’t there before.

People often say to me, “I don’t know how you do it” and my response is always that I just do and manage because I, like any parent, want to be the parent my children need and give them the best life that I can. Without being glib, I want to tell other NICU parents facing the unknown that it will all work out and everything will be OK, but I don’t want to be disingenuous – OK might not mean what you hoped for or expected; it will often hurt, and it might be extremely hard at times, but you can find the strength and confidence to make the best of it. You might even find that OK is better than you could have ever imagined.