“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!
What went wrong! - Parents please beware!
Jaundice, which we thought about 80% of newborn babies suffer from nowadays and was just a normal illness, ended up causing the a dreadful condition called Kernicterus to my son. Kernicterus is a type of brain damage caused by the Bilirubin Toxicity when bilirubin (yellow pigment) in blood diffuses into the central nervous system resulting in permanent neurological damage! Kernicterus is the mother of all the problems my son got:
- Profound Hearing Loss
- Destroyed Motor Functions
- Generalised Dystonia
- Vertical up-gaze problem
- And Many More!
So what were our shortcomings to make us as parents remarkably failed, reducing our dearest innocent son to such a state? The shortest answer: ignorance, lack of awareness, not knowing that Jaundice could do any of these conditions, as well as having too much faith to those who looked after my son! Had we got a slightest knowledge that Jaundice could cause any of these conditions we would have been so much more careful and wouldn't have taken any chances! We had been given assurances time and time again by those people saying that our son would be all right, the jaundice would go on its own! Had they not given those assurances it might have been a different outcome or at least along with those assurances had we been given any advice on what to look out for to identify if Jaundice was deepening or when we should ring the alarm bell or bring him to the hospital! What is so frustrating is that something that is so simple to treat, without even a drop of medication but just putting him to light, have caused such an extensive damage destroying an innocent baby's life who has known nothing but the warmth of his mother; this thought is depriving our sleeps time and time and time .... again. Parents, please remember this, not only for your innocent child but also for yourselves and your family!
Could we turn the clock back we would:
- not allow discharge from hospital without a blood test result showing that jaundice level decreasing and that he was absolutely safe from jaundice
- have taken him back to hospital when he cried with high-pitched sound on the evening of Dec 20th, 2010 while we were giving him bath, a warning that we were not aware about (sorry to say this but I got a lump in my throat when I think about it!)
- would have taken him back to hospital on the same night when he started showing he was not interested to drink milk at around 10-10:30 pm and he was very sleepy, oh God! our ignorant minds just thought he was normally getting sleepy as it was night time!
The night after writing this page above, I went to bed... I was taking a walk with my dear son near our house, talking to each other.. I was saying to him proudly "Yes indeed it is, it is Dudu's daddy" ("maannii.. dudu gee papa ni") ... he smiled at me and somehow rushed very fast ahead towards home then when I was approaching home I saw him walking behind the entrance gate then I shouted "Dudu... Dudu's daddy coming" ("Dudu... Dudu gee papa laakae") and he came running back to me and I woke up... mid night! Managed to get back to sleep, when I got up in the morning I had migraine that lasted for two days. [I call him Dudu, lovingly for Edu]