“I was born normal with Apgar score 10/10 at 1 and 5 mins but my normal life lasted less than 5 days...”
Sharing the story of our dearest son who became profoundly disabled as he didn't receive a simple treatment in time as a baby but always accepts the very many pains that he endures in his everyday life with big charming smiles, the smiles that give his parents the vital strength to keep going. We hope that these information serve to:
- Providing information to to-be parents
- Reminding the many health professionals the serious danger posed by Jaundice
- Sharing our experiences with those unfortunate parents out there
Chapters of Life
- Pregnancy - A period of dedication
- Birth - A special day for the parents
- Home - The moment of pride and jubilation for the family
- Hospital: Stage I - ICU, the moment the world turned upside down
- Hospital: Stage II - SCU, hope and prayer
- Home - A Second chance of life with a curtailed Splendour!
- Chief Executive's response, we just hope the hospital doesn't break any more hearts!
- What went wrong! - Parents please beware!
- Life! - Has to move on!
Hospital - Neonatal ICU
Our son was admitted to the A&E department around 7am in the morning. The sight of our little 4 days old baby, undressed on the hospital bed, with all four limbs kicking while the nurses were trying to take a blood sample remains fresh and clear in our minds. The only phototherapy machine that was available in the A&E department was not working and it took ages to get one down from the baby unit upstairs because of interdepartmental hospital protocols to be followed, we heard. May be, just may be, had the phototherapy could have been started as soon as our son was admitted, the damages could have been at least minimised! A bilirubin level of 505 micromol/L was obtained and exchange transfusion was requested at 08:10 hrs, triple phototherapy was requested. We were allowed to take 'shelter' in a parent/family room and in the meantime at around 11:20 hrs a double volume exchange transfusion commenced. By the time when the blood transfusion commenced the bilirubin level went up to a max of 673 micromol/L! We knew something serious happened but even in our wildest of thoughts we never ever imagined the magnitude of the issue that our little baby and the family were facing!
The Pediatric Consultant who was treating and administering the blood transfusion came into the room we were sitting with our heads down and fingers crossed; he told us that the blood transfusion had been finished and during the process the bilirubin level came down. He said that our son had to intubated and ventilated because of abnormal movements. We were reading from the Internet a little bit about effects of high level of jaundice while sitting in the room and we were already very scared (but why why why ... why didn't we try to find this out just two three days ago...)! He started giving some limited possible prognosis saying that he thought our son might make it through and SURVIVE but couldn't say the level of damages that could have been done! Our world crumbled down, we were crying in each others' arms inconsolably, there were nothing more that we could do. We did whatever we could, in all aspects for the well being of the baby but everything just proved that we terribly failed as parents. Even his brothers hadn't touched him yet for fear of seasonal virus, that had been the level of care that we thought we were taking! When the air of realism prevailed in the room and serene silence followed, we were allowed to get into our son's room. It was an awfully heartbreaking scene - utter nightmares for any parents, he was lifeless, his body was bloated with fluids, darkened, sedated and breathing artificially! No word can ever describe the sadness!
He was given a cocktail of antibiotics and anti-viral injections as he was suspected to be having some kind of infection causing the high level of jaundice. All the investigations for any suspected infection turned out to be negative. As per the records, at 14:50 hrs Atiya was intubated and ventilated because of abnormal movements. He was sedated with Morphine, Midazolam and Phenobarbitone for suspected epilepsy. His platelet count was low and at 19:30 hrs platelets were requested. No Paediatric platelets were available but at 19:50 hrs an adult pack was Issued. However, at about 21:50 hrs Atiya had a pulmonary haemorrhage. His oxygen saturation levels fell dramatically. He had no chest wall movement. His endotracheal tube was completely blocked with blood and he was bradycardic. Fresh blood came up In the suction catheters but he was rapidly resuscitated and after about 30 seconds his saturations had risen and he was re-intubated,
For more than a day I didn't have the courage to take any photo for my son but gathered myself and started taking some photographs on my phone, some of them are reproduced here for your reference; I hope you don't ever see them in reality, with your baby or anybody else's, for that matter!
Mum was still recovering from the surgery wounds of child birth but she took the risk of driving to the hospital and sit by our son's bedside for a few hours everyday. Another thing she made sure to do everyday was to extract breast milk to deposit them to the hospital's refrigerator - with the hope that one day our son would drink them and it would also keep the flow of the breast milk continuing when our son needed them again. I was there every day and night without much attention to food or sleep throughout the period, 7 days in neonatal ICU and beyond, sitting as much as possible by his bedside with my eyes shifting between monitors attached and my son then walking back to the designated parent/family room allocated to us - mostly remaining with the mind lost to blank sadness, a lump in the throat staring at the walls. The level of desperation during those days were so high that I was not able to bear the sights of parents carrying or pushing their babies around on prams in/around the hospital, I felt like I wanted to snatch them, perhaps might be exacerbated by the sleepless nights.
I don't exactly remember which day it was but I think it was on the 2nd or 3rd day of his time in the neonatal ICU where there was an EEG test done to monitor his brain activities. He was on the ICU bed, still ventilated. The report was normal with no seizure activities observed but there were times when his brain activities were flat. This flatness was thought to be due to the effects of the high level of sedatives like Morphine given to him. During the examination there was a sudden jump in the EEG graph as a response to a clapping. Whatever it was, this was perhaps the first sign in days that I was able to see our son responding to an action, this definitely gave me some strength. By the 5th day the phototherapy machine was disconnected, by the 6th day he completely came off the ventilation and on day 7, the last day in the ICU, he already had started testing his mother's milk deposited since he was admitted to the hospital.
At last our son's 7 days of neonatal ICU journey was coming to an end and by the next day he would be transferred to the Neonatal Special Care Unit. At this point he started falling his hairs, eyebrows, perhaps any hair on any part of his body, tainting a thin black colour on his bed sheet. By this time we were already aware of the consequences of 'untreated' jaundice and thus our thoughts were so remorseful but still were very pleased that our son was still with us and was getting discharged from the ICU, without still knowing the magnitude of the damage done!