This is my daughter. I am actually in this situation right now. But not because I want my daughter to die without suffering, because I want her to get a chance at life. She was born 11 days ago in New Zealand with a fatal heart condition if left untreated and other non lethal things such as 2 missing fingers. Her brain and everything else is fine and she so clearly wants to live.
Because of the hospitals concern that she is syndromic (not proven, detailed genetic tests have been done and no one has seen a case like this) they have decided against surgery. I’ve had a world renowned geneticist review her case and her report was ignored. I have fought this to the end, it’s been to ethics committee and still been turned down. They believe the risk of her suffering and possible brain damage from the surgery is not worth it, even though they do this surgery often in known cases with syndromes.
In a couple of days they will take her off the drug keeping her alive and she will be sent home to die, she innocently looks in our faces not knowing anything about the fate that was decided for her.
Should we let a child die in order to prevent suffering? No, not if there is still hope. I think the real question here is whether strangers have the right to decide about a child’s suffering or whether it should be up to the parents to let their child fight if that’s what the child is doing. In our case we were not given the choice. It was handed over to 17 people who had never even met her. Even her pediatric cardiologist has fought against her own colleagues.
My miracle baby has overcome so much already, and has proven to everyone that she is a fighter…. Yet on Thursday she will still be left to die. Is it ever right? Maybe… In this case no I don’t believe it is.
Update: Friday 2nd December. She was sent home from hospital and all drugs disconnected. I jumped on the plane with her immediately to our home country UAE. Now hopefully she is in safe hands. 24 terrifying hours but she’s been admitted to the best pediatric cardiology department in UAE – now just have to pray they will accept her for surgery! I will never stop fighting for my precious girl.
Update: (Friday 2nd December) She’s just been admitted to NICU in UAE but she crashed a few hours later and needed CPR. She’s on life support now but again the problem with surgery, let’s hope this team sees some sense. Her surgeon is the nicest Dr I’ve ever met, that’s a start.
Update (Thursday 8th December) Lamees has had her surgery. It was a very difficult procedure but so far she is doing very well. No mention was ever made about her missing fingers – no suggestion at all that she is syndromic. They looked only at the life in front of them and have done their very best to save her.
Update (12th December) I’m sad to say that Lamees passed away yesterday, age 23 days. Thank you to all that commented and prayed, she was and always will be my little angel.
