Miracle baby

"My first week here was one of the hardest of my entire career." 

Nurse Johanna blogs from Agok, a town in the Abyei region between Sudan and South Sudan, where she's been working for Médecins Sans Frontières/Doctors Without Borders (MSF).

My first week here was one of the hardest of my entire career. I crossed paths with my predecessor in Juba but it meant that she had already left the project by the time I got here so I didn't get a handover or a chance to shadow a shift to learn what was expected of me. I arrived on Wednesday, and on Thursday I was in charge of the unit, it was quite a baptism of fire. 

I didn't know it at the time but by some random twist of fate I also happened to arrive in a particularly bad week for the babies of Agok.

We had to perform CPR on a baby pretty much every day of that week, and while some survived, others did not. Being an Emergency Nurse I have had to deal with children dying before, but maybe one or two a year, never several in one week. And it is never easy. 

It was an extremely challenging experience and I had more than a few moments when I asked myself what on earth I was doing here, and wondered if I'd even last six days let alone six months! Throughout it all Katherine, one of the expat midwives, was a constant source of support and kept trying to reassure me that it wasn't always this bad.

In the middle of all this arrived my miracle baby. The first I knew of his existence was when one of the midwives came running into Neonates dressed in surgical scrubs, a gown and a mask. In her arms was a bundle of cloth, and inside, I presumed, a baby.

She quickly explained that she had just attended an emergency caesarean section on a woman who had been transferred to us after spending more than two days in labour. Unsurprisingly, both mother and baby were not doing well, so she had decided to bring the baby to Neonates so we could concentrate on him and leave the surgeons to do everything they could for the mother.

We ran together to the delivery room and when she lay the baby under the warmer I began to understand why the labour had lasted so long — his body was the size of a normal term baby but his head was misshapen and perhaps two times as big as I would have expected it to be. But that was not the important issue at that moment — he was hardly breathing.

His oxygen levels were less than half what they should have been and his heart rate was dangerously low — all signs of a baby that has only a short time left to live. I started trying to deliver some artificial breaths using a bag and mask (no easy feat as the shape of his head meant it was difficult to get him in the right position) while the midwife started chest compressions to try and encourage his heart to beat fast again.

It was at this point Katherine returned. Just twenty minutes earlier we had both been having lunch and she had reassured me again that the week from hell we had been having was not normal, and she was sure we wouldn't have any more drama...

As she walked in to find us engaged in yet another resuscitation our eyes locked and she mouthed: “You've got to be kidding?!” as she sprung into action to help. We continued to resuscitate the baby with the help of the MD for another twenty minutes. His heart rate had picked up but his breathing was still sporadic and ragged, that along with his large and misshapen head and his eyes that looked like two suns setting implied that there was too much pressure in his head and his chances of survival were very slim. 

We stopped the resuscitation with the aim of not prolonging his suffering any more, and agreed that we would start antibiotic treatment if he was still alive in an hour. I don't think any of us expected him to be.

An hour later, as I gave him his first doses of intravenous antibiotics I recognised that we had a true fighter on our hands, for him to make it this far was a minor miracle.

When I left that evening I didn't think he would survive the night, but sure enough when I arrived the next morning he was still there — by far the biggest baby on the ward, living under our warmer as his mother was also still in critical condition.

At the beginning I don't think any of us dared to hope that he would make it, but little by little he established his intention to stay in this world. First he stopped requiring oxygen, then he showed a strong sucking reflex that meant he didn't need intravenous fluids anymore and then before we knew it his week long course of antibiotics was finished and he was still alive, feeding and breathing just as he should.

Although we were his primary carers for his first week, his grandmother was devoted to him from the beginning, visiting regularly when she wasn't caring for her daughter. This was a relief to see as there had been some concerns that his difference might lead to him being rejected by his family.

We did have one problem though — what to call him. He didn't yet have a name, or a bed number (as he lived under the warmer) so often when talking of him my assistants and I ended up calling him 'Big Head Baby' to clarify who we were talking about. This was vital for communication but it didn't feel very kind. For a while we called him ‘Manam’, until I found out that it just meant 'Big Head Baby' in the local language. In the end he became 'Our Baby', not entirely factual but it described who we were talking about and went some way to express our attachment.

I quickly began to fall in love with this strong willed baby and his doting grandmother. They had been transferred to us from another region so his grandmother didn't speak the same language as most of the staff and patients, but we managed to communicate well enough through gestures and signs. She had the most beautiful, delicate scarification all over her face — concentric waves of tiny dots radiating out around her eyes and across her forehead, she was always happy to chat away, me in my language and her in hers. 

When he was first born ‘Our Baby’ had spent so long in the womb and in labour that his skin had thickened and developed hard patches, almost like a crocodile. We had to call the anaesthetist to come and cannulate him, and even that was a struggle because the needles just bounced off his skin. Grandmother and I spent a lot of time massaging Vaseline (the only moisturiser we could find) all over him. Although it was unpleasant when after a few days the dead skin started coming off on our hands, it felt like he was a butterfly emerging from his chrysalis, and his leathery exterior melted away to reveal a soft and smooth baby underneath.

The next person ‘Our Baby’ had to win over was his mother. Perhaps because of his unusual appearance, or because she didn't think he'd survive, or because she was traumatised by the delivery, or because she was still unwell herself, she didn't seem very bonded with him.

It took almost a month to get him completely breastfed, partly because during her illness her milk production had reduced, but also because she would always find other things to do when it was time to feed him. Grandmother was having none of it, and would march her back to feed the baby. Although I knew his grandmother adored him and would make sure he was looked after, I couldn't help but worry about what his future would hold.

‘Our Baby’ was never going to develop normally or be like other children, he was going to need all the help he could get to survive and to be accepted by those around him, and his mother would need to play a large part in that.

The turning point came one morning when I overheard a heated discussion between ‘Our Baby's’ mum, grandmother and someone else. I could tell this person was speaking aggressively so I asked a translator to tell me what was happening.

He told me that they were asking mum and grandmother why they were treating ‘Our Baby’ as if he was normal, when anyone could tell that he wasn't. They went on to demand that if they thought he was normal they should explain why they had never seen anyone with a head so large before.

I was absolutely furious — after all the effort we had made to try and help his mother come to accept her baby, and now this person was trying to make her feel bad about it! But before I could intervene, his mother pulled herself up tall, looked her baby's detractor straight in the eye and informed them that her baby had been made exactly the way God intended, no matter the size of his head. It was a small victory, but it felt like a big milestone. 

A few days later it was time to say goodbye. As I helped them carry their things to the transport jeep Grandmother and I continued our dual lingual conversations and baby slept peacefully in his mother’s arms.

His life will not be easy but he is a true fighter, and has some good allies, so hopefully it will be happy.