A sad day in T9M world

It's a sad day in T9M world today. Little six month old baby Glasha, the Russian baby that I wrote about a few blogs back, passed away last night.

Like all T9M babies and children, Glasha faced her own set of unique challenges, as defined by where her mosaic third chromosome cells were. Unfortunately some of these were in her heart and while these would have been treatable in time, her health was recently further complicated by respiratory issues, pneumonia and other challenges. While she has been in intensive care over the past week, as well as in the thoughts of many around the world trying to help her, sadly it just wasn't enough.

Understanding the health challenges - not to mention trying to understand the Russian health system that allows only one parent a day to visit their child in intensive care, and for only ten minutes a day (as well as one which suggests that parents leave their trisomy child in hospital at birth, to be raised as a hospital child), has been hard. Some of the differences compared to what we would experience here, really are unfathomable.

Naturally her parents Olga and Ivan are distraught. As is the entire T9M global community. It cuts far too close to home for all of us - it really is heart-breaking. Tonight there are candles being lit all around the world in wee Glasha's memory, and there are many facebook posts of love and support for the family.

Our candle for Glasha

I don't really know what else to say now. It brings me to tears just thinking about her. We have lit our own candle in her memory tonight along with one of Nate's soft toys. Rest in peace little Glasha.

While it is apparent from the various Facebook groups that I follow, that some trisomy babies 'gain their angel wings' far too early, it is less common in T9M world, than in some of the other trisomy worlds. Clearly this is not the first T9M loss that the global family have faced, but it is the first for us.

On top of that shock, I am stunned by what some of the babies and parents are dealing with around the world. Like two year old Annabeth in Sacramento, who is now having her fourth brain surgery in less than a month. Or little Brianna, who after vomiting bile and having a distended belly, and who has now got gallstones. Or the wee ones who fight repeated bouts of pneumonia and seem to be in and out of hospital like yo-yo's. Or even the parents who manage their children in casts at home for six week periods at a time, while hip joints are reset to better enable their chances of walking. The mind boggles as to how these families keep things together.

It is awful to feel so incredibly sad for Olga and Ivan, and yet at the very same time feel so very relieved and so incredibly fortunate that Nate seems comparatively healthy. It is a reminder for us of just how vigilant we need to be around his health - coughs, colds, and flus - sometimes its easy to forget that he actually has this condition, and that we need to be so careful.

But even more than that, this is all just a massive reminder of how important it is to make the most of every day that we have with our gorgeous wee man. Tonight we have sung some songs, had a number of noisy chats, mum-mum-mum-mum-ed each other, showcased our raspberries, and had lots of cuddles and kisses. Love our perfect little man. X

 

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