Email: info@pierrerobin.org.za  |  Mobile: +27 21 827 0240  |  Address: 4B St James Street, Somerset West, Cape Town, South Africa 

Addisson Lowe – Born 10 November 2012

On the 10 of November 2012 at 8.05pm we were blessed with our beautiful arrival Addisson-Elliott he weighed 5lb 15oz and to us was just perfect…


In the morning just as we were due to come home Addisson started to cough and choke so the midwife said it was just mucus on his chest from being born…I never questioned it and was happy to have my beautiful bundle of joy at home with us…


After 3 days Addisson was struggling to feed properly we were told it was because he was small and still a new baby his weight was slightly dropping but they said it was fine… they realised he had a tongue tie so off we went to have that cut and that’s when things got worse.

By day 7 he wasn’t himself and had been making a grunting noise so off I went again to the doctors who told me he was perfectly fine 10 minutes later at home we were dialing 999 (UK) as Addisson had stopped breathing… after what seemed like an eternity he took a breath but was a dusky blue colour and was skipping breaths… at the emergency room they checked him and said oh don’t worry its normal and sent us home I knew it wasn’t normal as I’m a mum of 6… another week past by and he became sicker with a cough we were told he had a viral infection and told not to worry this continued for 8 weeks been fobbed off with all kinds of stories…


Then the same happened again he was taken back in as his breathing deteriorated so off we went to the emergency room and this time a doctor asked if Addisson looked like my other children as to that I replied yes he does she asked me over and over if I was sure I kept replying yes I’m sure… off she went and we were admitted to watch him over night


Next morning dr Williams came to see Addisson and he looked at me and said you do know your son as PRS!!! I just said erm no I didn’t but I do know he said its a small lower jaw loose tongue and off he went that was that… I got my friend to go on the Internet and forward me all the info she could get by this point I was a wreak I was crying n worried sick and all I had was my little man to keep me from running round like a mad woman… up till now the only support and advice Ive had is from this site and its been a life saver for us we are all new to our journey with prs and will continue to update as we travel along xxxx