Yesterday I spent a lot of time thinking about all the parents I know about who have had a child with T18. A few are alive but most like Zakk are sadly no longer with us. There are so many. When we began this journey we felt totally alone as we knew no-one else in a similar position, and now I know that is far from the reality. There are babies born around the world every day and many are not fortunate enough to be born alive.
As parents our experiences are so different and so much depends on the help and understanding of medical professionals who's own knowledge and understanding of our children is in many cases sadly lacking. I always got the impression from Doctors I dealt with that by refusing to intervene to help Zakk or treat him they felt they were doing me a favour, like they knew best and my constant insistence that I wanted him kept alive was a foolish notion. In the end they hid behind their policies and I could do nothing. A fact I may never learn to live with, although I know my grief is still very new, and I hope my anger will dissipate in time.
This week I know more babies have died because they had T18. I have no doubt that some babies could have more time with their parents if more intervention was given to help them and I have no way of knowing if this would have helped Zakk live a little longer, but I would have liked the chance to find out. I am grateful at least for the care I was given after Zakk died by the midwives and nurses who dealt with me. I cant speak of the Doctors as from the moment I was moved to a private room away from the delivery suite I did not see or hear from any of them nor have I since. For me that says it all...
The hospital staff I did see helped me gather mementos of Zakk by taking prints of his hands and feet and making sure I was given his little blue hospital tags, even though as he never made it to the nursery, he didn't get to wear them. I am grateful too that I was allowed to keep him with me throughout my stay and while I needed no encouragement they were keen that I should nurse him and make the best of the all too short time we would have. This time for Marcus and I was so precious, as was the time we had with Zakk when we took him home with us and he stayed for two days before his funeral. I cannot even begin to explain how important and special this was for us and for our friends and family.
I had been told by others I know who sadly lost their own children in the past that every moment is precious and Marcus and I should do what we wanted, take the time we needed and take as many photographs as possible. That is exactly what we did, and we will both be forever grateful for this advice. We have Zakks hand and foot prints taken by the midwives, we also took his footprints in clay and a lock of his hair. These mementos and the hundreds of photographs we took over the four days Zakk was with us are our most precious possessions. As a parent in a devastating situation it would be very difficult to be strong and assertive, so we realise how luck we were that at least those looking after us respected and understood what we needed, and helped us as much as they could. As parents we have to live our lifetime on the all too short time we had with Zakk, but I know from the experience of others including my own parents, how lucky we really are to have had the time we did and the memories we made with Zakk.