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

Home - The moment of pride and jubilation for the family

As it would be for most other families, working hard in life and trying to do our best, especially for our children is in our blood and traditions. Since our profession brought us to our adopted country our two elder children were born and brought up in rented accommodations. As parents of boys we always felt bad restricting them from doing certain things that boys naturally would do, setting dos and dont's as we were not in our own house. We finally managed to buy our own home in 2008 and the boys were able enjoy the independence, choosing their own space and time, doing what they wanted. What more would any parent ask for than seeing their children enjoy and happy! As the elder two boys were born in rented accommodations before we were well settled down we as parents really missed the proper arrangements for a child birth, with all the new items in the house to welcome the baby. So we started planning for a baby thinking that it was even a bonus if it were a girl. During the later part of the pregnancy we decided to know the sex of the baby so that we could buy all the items accordingly. We were so satisfied and pleased to see all those items slowly assembled in the house and were really impatient to welcome our third son.

Sat, Dec 18. It was a snowy day, the streets were full of snow, so as our driveway and the entrance to the main door. We arrived home in the afternoon. We gave him the first bath of his life, changed with new and clean clothing, fed him and put him to his new bedding and new everything that we had been preparing for months specially for this occasion, we were so pleased and over the moon. The elder boys wanted to hold him so much but we didn't allow them as they were having seasonal flue and we thought they might be contagious. They were standing from outside the door and were looking on to their baby brother. Even dad slept in a separate room and tried not to touch the baby as much as possible as it was dady's responsibility to look after the other boys, who were just 7 and 5 years old by then. (We have heavy hearts whenever we think about the scenes and see the photos of them standing at the door!)

Sun, Dec 19. At around 11am a community midwife visited, weighed and checked overall baby's health. She also noticed that the baby was slightly jaundiced but nothing beyond that, didn't offer any other advice. She scheduled her visit for Dec 21 and left. Otherwise our son was doing all right, he was feeding ok and on top of that we had been re-assured so many times by the health professionals who were responsible for the medical well being of our son. Dec 19 was gone and Dec 20 arrived. The only change we knew was that the skin colour became deeper but we also knew that the midwife was visiting us at 9 am on Dec 21. So we thought to wait until the next day. Also when we looked back, our son cried with a higher pitch sound when we were giving him bath on the evening of Dec 20, around 8pm. The following are some of the photographs from Dec 19 and Dec 20. Our hearts bleed and lumps appear in our throats when we see these photographs but we are sharing them with the hope that the readers can correlate the events and take away the lesson that we were not fortunate enough to learn in time!

He was very sleepy on the night of Dec 20. He had his last feed around 10-10:30 pm and gone to sleep. We definitely knew that he was more sleepy than usual but we didn't know if it was something to do with jaundice (now we weep when we think about it) and was something to look out for. When we tried to feed him afterwards he wouldn't be interested (perhaps another lesson!). By about 5am (Dec 21) we felt something was wrong. So not knowing what to do we called the same maternity ward of the hospital and explained what was happening. The lady on the other end enquired when the community midwife was due to visit, upon knowing from us that it was due at 9am later in the morning she advised us to wait for the visit. We were still concerned; after a little while we tried to give him a little bottle milk which he didn't like and was choking on it. We were very concerned by then so we called NHS direct who arranged an ambulance which arrived at around 6:30 am. Had we called the NHS direct in the first place instead of the maternity ward, could be the lost hour might have been just enough to save him! We were concerned but never very alarmed as we never suspected that there was that monster confronting our little baby, the ignorance that not only ignites but pours oil to the fire of remorse that we carry forever thereafter! The events unfolded on that fateful day turned our worlds upside down... forever, with no more hope left to bring them back to up right position other than embracing spiritualism!

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