Our miracle baby – the day a mother named her child after me!
Jun 27, 2016
© Kai Cheong
This is baby Kai. This is her MSF story.
The baby presented late on day 10 of life with severe meningitis, increased pressure in the brain, refractory and persistent seizures, very toxic build-up of jaundice to the point of what we call “kernicterus”. She had lots of irritation to the brain and abnormal body posturing, because of harm to the areas of the brain that are particular sensitive to this condition. I was expecting the worst for permanent brain damage even if she survived, so there was no “before treatment” photo. I have never seen a baby totally ORANGE in colour, and she was in extremely critical condition.
Back home, this baby would have come to us much earlier, if the family didn’t have to walk for days in the bush just to reach us. Back home, this baby would be hooked up to lots of tubes and machines in a high-tech intensive care unit, with lots of nurses and consultants hovering around and monitoring her. Back home, we would have a variety of possible medication options and procedures that could help her.
But here in South Sudan: we have no investigations available, no phototherapy lights to bring down the jaundice, no exchange transfusion (gradual replacement of entire blood volume to remove the toxic substances from the blood). We have no intubation or ventilator options if a child’s brain (the control centre) stops working normally, and the child stops breathing. Even 7am- 8am sunlight as an alternative to phototherapy was not an option, as the baby would be dehydrated sweating here in 55 degree weather, and make everything worse!
All we could do was push on with the limited resources we had, armed with knowledge of newborn physiology and how their bodies work. All we could give was just the best antibiotics and older anti-epileptic drugs we could find (South Sudan has had a shortage of critical drugs in the past few months)… Aggressive but obsessively careful fluid hyper-hydration and titration... Exhausting manual face-mask bagging by hand the entire night to ventilate her when she wasn't breathing… and also sadly lots of counselling the parents on how to expect the worse prognosis, even if she survived.
Her condition fluctuated hourly, and it was very difficult to stabilize her without the equipment and nursing skill level you would normally expect in a neonatal intensive care unit. Our local nurses stepped up to the task however, and were eager to learn a lot – so we also took this opportunity to train our local staff on newborn resuscitation, after which we saw a huge increase in their skill level and ability to manage other sick (and especially preterm) babies.
After a frustrating week of fine adjustments of whatever limited parameters we could (oxygen, fluid, drugs), and a necessary medication-induced coma to stop the cycle of seizures and rest the brain - one morning she started improving. She stopped crashing every few hours. We were able to slowly step down some medications and start supplementary milk through a special feeding tube. After another week she was still jaundiced and yellow, with lots of abnormal neck arching postures, but starting to suck on my finger and visually following light. After another week, she was finally breastfeeding.
© Kai Cheong
Despite all odds against her, pessimistic expectations, and a very stormy course to recovery - our baby was a true survivor! One month later, she is now fully treated and seizure free, and discharged with NO evidence of permanent brain damage! Even the abnormal posturing is gone. She is active and happy and feeding well. We are lucky babies are so elastic! And very lucky that if you understand and use basic knowledge on how their bodies work, you can still do quite a lot with very little resources and thinking outside the box!
The baby’s father works for the ministry of health in this area, and he is very impressed. A good memory of MSF, as we prepare to handover to another organization here.
Our amazing team are incredibly blessed and thankful that this baby survived, is healthy now and with no evidence of serious long-term problems.
She was ORANGE when she came, but now you can see she is back to her original colour and adorable self!
We took one last picture, after which the mother told me they are naming her baby Kai, after me.