In June i gave birth to identical twins and 48hours later one was diagnosed with PRS...something we had never heard of and were certainly not prepared for. The boys were born prem at 36 wks so placed in special care nursery. After a week my first twin sufferred respiratory and subsequent cardiac distress and was transferred to the Royal Childrens hospital. I remember distincly our first meeting with the consultant neonatologist when he said little Austin's stay would "not be a short admission" and I had no idea what he meant. SOme four months later, after endless weeks of "wait and see" medical traumatic procedures, then jaw distraction surgery and psuedo-monas infection he has finally been discharged home. We are now realising the consequences of such a long hospital stay...he crys inconsolably, doesn't really know us, is overcoming medication dependency and is having lots of trouble adjusting to his new environment. One other consequence is that due to spending the first 10 weeks or more sleeping on his side, he now has the "classic" PR look of a extremely narrow head at his temples and chubby cheeks. The change in his head shape is markedly different to his identical twin brother and my question is... Does this head shape change back/ broaden after time?? what can be done to promote it?? After such a long time Austin does not sleep well on his back with his shoulders and head flat on his mattress, preferring to turn it sharply to one side and i'm wondering if i should try encourage him to sleep straight.. Would appreciate and feedback or thoughts Thankyou
Hi, first of all, my heart goes out to you as it is so hard raising a baby with no additional medical conditions, never mind one who has obsticles to overcome. The feeling of helplessness, despiration, tiredness, emotions etc etc, are very hard to deal with especially when there are not a lot of people around who can relate to what you are going through, which is why this organisation is fantastic. Although my son Ethan was nursed prone, I know that with my eldest son, he had a "flat spot" on the side of his head which the health nurse used to hound me about - to the extent that she told us he would probably need to be referred to a physio and possibly wear a padded helmet so he didnt have an odd shaped head!! The only thing I can remember having to do, was trying to alternate the side I put his head when I placed him on his back to sleep. This wasnt always easy as he had his preferred side, so a wedge can also help, or him sleeping slightly on his side, rather then flat on his back. The head turning may also work if nursed prone. This probably doesnt help much, but please remember that the first 6 -9 months were probably the hardest for a lot of PRS parents and things will get easier (although the light at the end of the tunnel is probably not in sight yet) xxx
Hi I just read your entry and I'm not sure if it will help at all but I remember some ladies in my mothers group talking about a pillow in the shape of a heart that they got off the Internet which helped to promote a " normal" head shape. Obviously this will probably only be benefical if your little one is able to sleep on his back. With my son I found that especially when ge started to roll he moved so much in his cot at night that I don't think he was ever still enough to get a flat spot. Otherwise some suggestions that we're made to me were using a wedge or putting something that bub likes to look at on one side of the cot to encourage him to turn that way and also changing which way I made the cot if he preferred looking at something in one direction. Hope some of this helps!
