Little Silver Tube

Where do I start.. It was said at times that I may not even be able to have children due to my body and breathing. There wasn't any real information or support groups for people with PRS and with trachys that have had children. Christmas Eve 2014, was the day I found out I was pregnant. I called Prince as he was at work - we were both shocked as we were not trying to get pregnant. All kinds of emotions were going round, am I ready? But clearly my body was.  I had a really easy pregnancy with her, a ridiculous amount of sickness for 17 weeks then it was bliss! I loved being pregnant, I loved my bump and feeling her move around.  I had to have regular checks on myself and the baby. They did intense scans to see if they could identify any abnormalities with her chin and palate to see if she had PRS.  From 30 weeks I saw the consultant every Friday for scans and checkups.  At 37+3 weeks 03-08-2015 @ 10:40 I had an elective cesarean section. They did not want m...

This is something I don't tend to share with people. I will most probably re-write this post many times before I actually publish it.  I just wanted to share how having multiple issues with my health has affected my mental health and how I look at myself.  I often say 'I hate myself' and that's not because of what has happened, it is because of the way I look at myself. I wish I was able to look at myself and think wow I've been through alot and I'm still here, with my daughter amazing family and friends.  But sometimes I cant.  I am so self conscious.I question everything I do. I take pictures, and post them on Social Media, I guess searching for acceptance from other people as I haven't quite got there myself yet. I seem to have such an issue when it comes to meeting new people and telling them about my trachy and all the things that have happened to me because, I worry that they will lose interest or will judge me for it. For some reason I see it as...

My first years were quite difficult, not for me of course as I don't remember them,  but mainly for my parents, brothers and extended family. I have asked them all to write something, so there will be a link to read there stories soon. Along with my Pierre Robin Syndrome, I was born with dodgy hips - aka hip dysplasia. So I ended up in traction for a while then my hips were put into place and wrapped in a plaster cast for 9 months. Since then I have had problems with my hips but luckily have not needed any operations on them. I had alot of operations on my trachea and cleft palate. I had a full cleft palate when I was born, which is where the roof of my mouth just wasn't there. So they had to create one for me. Having no palate was the reason that I was fed through an NG tube for a while.  Having 3 older brothers made my life so busy, when I wasn't in hospital I was watching them play football and cricket. Every. Single. Weekend.  This was a good distraction f...

I'm going to make this a brief one.  Basically a tracheostomy, is a tube that is inserted into the trachea to provide an airway for someone that is compromised some way or another.  My one is there because my upper airway is so small there is not enough space for me to breathe normally. So having the tracheostomy there enables me to breathe.  Here is a diagram of the different tubes and how they sit in the airway. My one is most similar to (b). I have a fenstrated tube to enable air to go over my vocal chords so I have a voice. ( I literally talk for england!) This is what my tube is, Silver Negus. Made from pure silver. Looks alot nicer than some of the others and reduces risks of infections.

Now, not many people really know of Pierre Robin Syndrome, as it is pretty rare. 1 in 8,000 - 30,000 people worldwide are affected.  It comes in different severities, mild, moderate and severe. I have a severe case.  Below is taken from CLAPA (Cleft Lip and Palate Association) so you can gain a brief understanding. The Features of Pierre Robin Syndrome - Also known as Sequence are: Small Lower Jaw A baby with PRS will have a jaw which is noticeably smaller and more receded than those of other babies. This is called ‘mandibular hypoplasia’ or ‘micrognathia’. The smaller jaw is thought to be the cause of the other features of PRS, but because the jawbone continues to grow as children get older, it usually doesn’t need to be treated surgically. Breathing difficulties The smaller lower jaw means the baby’s tongue will be further back than usual. This means it is more likely to ball up and fall backwards into the throat, causing obstruction and therefore breathing dif...