My identical twin boys arrived into the world at only 34 weeks on the 6th November 2008 so they had to spend there first 4 weeks of their new life in the HDU. Thankfully we got them home before christmas and everything was great until Brandon the youngest twin started having problems trying to hold his head up on his own it was always flopping and we had to go to the hospital to have the doctor explain what was happening with him, luckly it was just because he was premature some of the musles in his neck were still a little weak.
When they were around 3 months old i had noticed that Brandons head shape was a little unusual it was flattened at the back right side and looked narrow at the front at his forehead, we were attending the hospital every 3 months because they were premature as the pediatrition wanted to keep an eye on there progress so the next visit to him i asked him about Brandons head shape and he assured me that it would be fine and it would settle down it was just the side that he had found most comfortable to lie on and it was normal for this. When the twins were nine months old after a few visits to the hospital we went back to the hospital again for a check up and i asked him again about there head shape as by this time Dylan the older of the twins his head had went the same shape apart from the flattened side was oppossite to Brandons and again i was told not to worry it was only because they were premature that these things were common.
Eventually on there November visit to the hospital they were just over 1 year old i said to the doctor again about the twins head and this time he said he would refer me to a surgen at the Suthern General Hospital in Glasgow just to give me piece of mind that everything was alright with my boys. On April 2009 we eventually got an a appointment to go see the surgen, as soon as i walked into the room with my boys the surgen recognized what i had been trying to get others to for all those months. He told me that they both had Craniosynostosis i had never heard of this condition so i had a lot of questions : for example; what was Craniosynostosis how would they fix it was it dangerous to my boys He then went on to explain to me what it was i was terrified he was trying to explain it all to me but i couldnt take it all in i was given a number to call the hospital with any questions that i had but i had to see what it was for myself so i went onto the internet and saw some videos of what was going to happen, unfortunatly i didnt know anyone that had been through what i was about to go through. On the 24th of August 2010 Brandon was admitted into hospital to have his opperation.
No one had prepared me for what it was going to be like especially the recovery period,the first time i saw Brandon after his opp was in ICU i was so scared to c him to my amazement Brandon recovered really well after his opp and had to stay in the hospital for 1 week after, his head shape was great on his 7th day dylan was admitted for his opperation and that was great as i had the twins together for an over nite in the hospital. Dylan also recovered very well after his opp and i got him home on his 7th day i was so happy as my little twins were back together again , they had been apart for 2 weeks. head shapes they are doing really well and we go to the hospital for regular check.
I now know so many other families that have been through the same experience as i have thanks to Craniosynostosis-Plagiocephaly Page Cappskids they were there for me to talk about how i was feeling afterwards and answered all the questions i had, through my experience i now find myself helping other familys with questions that they have and i can now answer.