Atiya Mani, the Jewel of the Sky

“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

Birth - A special day for the parents

We got up early, took shower and prayed for the well being of both mum and baby. It was still a fine winter day with worsening wintry weather forecast. We arrived at the hospital well in time for the procedure.

Everything went smoothly as planned and a healthy baby was delivered at 9:34 am by c-section that fateful morning; we were really over the moon, both mum and baby were doing fantastically well, we couldn't have asked anything more from everyone involved. This was summarised in the letter that the surgeon later sent to our GP as follows.

Mum and baby recovered in the recovery suite for around 2 hours after the delivery. We were so pleased that both mum and baby were doing very well and were having a great time in the recovery room after more than 38 weeks of hide and seek where we were just doing what we thought would be the best for him through our 'sensual' feelings. We couldn't stop smiling, happily taking turns to hold and cuddle him for the first time.

Mum and baby were admitted to the maternity ward at around 1 pm, Dec 16. At the pre-op assessment it had been agreed after a proper discussion at length that she would stay in the hospital until Sunday December 19 but once in the ward it seemed as if there were no such a discussion. The lady who was taking admissions duty at the ward wanted an earlier discharge and in spite of us reminding her of what was agreed and the baby's risk to jaundice citing his brothers' medical histories she really didn't seem to care much and noted down the discharge date as Saturday, December 18. We felt really bad but agreed that we would go back provided both the baby and mother were doing all right by then.

At approximately 14:30 hrs on the same day the serum bilirubin level (SBR) was measured and noted to be 88 micromol/L. At 23:00 hrs this was noted to have risen to 105 micromol/L. A further SBR check was undertaken and noted to be 120 micromol/L at 9:30 am on the 17th December 2010. All the three results were indeed below the treatment level but these were within the first 24hrs of the baby's life. Later we found that according to NICE (National Institute for Health and Care Excellence) jaundice in the first 24hrs needed urgent assessment. No further checks of the baby's SBR were carried out.

On Saturday, Dec 18 the mid wife (Mrs DW) appeared in the room 5e of the ward and commented “so you are ready to go home, I'm preparing your paperwork”. On inquiry about the condition of the baby's jaundice she walked away and came back with the SBR report (which we later realised was actually more than 24 hrs old and no further checks were done afterwards) and used it to convince us that the results were much below the treatment level and there were nothing to worry about as it would go away on its own. So we took her professional words and got ready for the journey home, bought a thank you card and sweets from a store attached to the hospital and presented it to the staffs in the ward. Before leaving, we were still not happy with the baby's skin and eye colour and suspected that he was suffering from jaundice so we spoke to an unidentified Midwife at the Reception who checked the baby and said the baby was fine (we later found that the discharge letter mentioned as the baby was slightly jaundiced). So the mum and baby were discharged from Hospital at lunchtime on 18th December 2010 and thus started the innocently happy and proud journey back home without knowing that it was the beginning of a long remorseful journey with no light visible on the other end!

Previous Next