Good Morning Kids,
I thought I'd let you know more about Louis. We subscribe to a charity that helps children like Louis, they are called TOF.ORG. Recently the charity asked us to write about Louis story to be published in the charities magazine. Here is his story.
Louis’Story
Louis was born on the 17th May 2010 to the sound of Van Morrison’s ‘Brown Eyed Girl’. The 20 week scan didn’t give us any clue as to what to expect when our bundle of preciousness made it into the world. And although he sounded a little chesty at birth, we were told by the theatre staff that this was a natural consequence of the caesarean birth. His nail beds and lips were tinged with a blueness which remained all day and when he fed it came back through his nose each time. It wasn’t until later that same evening when following much investigation we were asked to come up as the doctors needed to speak with us in the Neonatal ICU. We were ushered into a room and told to sit down; they told us that Louis had what was called a TOF and that an emergency operation is needed. We signed the consent forms and went back downstairs to our room with the fresh Polaroid photo they took of him before he went to theatre. We did not speak for 4 hours such was the shock.
Louis had what seemed like a dozen pipes coming outof him as he lay in his Perspex cot in the NICU dept of Hull Royal Infirmary.We were told he was doing fine and that the operation went well as the gap was short and as such the repair was fairly straight forward. We so wanted to hold and cuddle, him but we could not. This was to be the case for the next 4 weeks;it was heartbreaking for us and we never left his side. But despite his even getting Horners Syndrome (a condition relating to damage to the nerves controlling the eyelids and encountered during his initial operation) and suffering a collapsed lung due to a less than careful nurse accidentally dislodging his chest drain, he managed to go from strength to strength. Following another couple of weeks on the mainward of the Neonatal unit we bought our sunshine boy home with us.
Louis has had four dilatations which all went very well and all were performed within the first six months. Since then he has been checked but deemed ok for the time being. Louis’ doctors say that it is likelythat he will need further dilatationsbut certainly not right now. Incidentally, the surgeon who performed Louis’repair was a certain Sanja Besarovic: of course we knew nothing of this lady before the 17th May 2010 but since then we have come to know her not only for her quite astonishing skill as a surgeon but also for her story of having to flee war torn Sarajevo smuggled inside the trunk of a car, but then going onto become this counties most accomplished and respected paediatric surgeons. Itseems that in a bizarre way we were lucky to be living in the same city where she practiced. Louis does get to see his surgeon regularly at his TOF Clinic sessions.
Development Issues
When Louis was over 1 year old we noticed that Louis sometimes seemed a little withdrawn and this only seemed to get worse. Sometimes we wondered if Louis even knew we were in the house or indeed thesame room. Other things gave us cause for concern about Louis’ development; he never pointed or gestured that he was hungry or thirsty like other children his same age, all the time he seemed to be withdrawing more and more into himself. He never responded to his name and would not give us any eye contact. We decided to seek professional help and now, following months of seeing specialists and his undergoing tests etc Louis is getting the help he needs in developing the social and communications skill that he needs. Louis regularly receives Portage sessions at home and at the local childrens centre and is doing well.He also started preschool in September and is funded for one to one care within the preschool. Louis’ one to one is a wonderful lady that genuinely cares for him and has definitely fallen for the Louis charm!! We think that on reflection it is the decision to have Louis start preschool a year early that is perhaps one of the best things we could have done for him to aid his development. Now we get all the eye contact we ask for and he points to what he wants (sometimes) like food, and responds fully to his name albeit when he wants to!
Louis has recently been subject to the rather gruelling Griffiths Assessment which is designed to give a clearer more defined picture of any developmental delay issues, and will illuminate the path or paths available for us to ensure that Louis receives the very best of care and help in order for him to achieve the goals for a normal 3 - 4 year old when the time comes. We are, as we write this, awaiting the results of that assessment.
Paediatricians are not yet sure as to the reasons why Louis is suffering developmental delay in some areas. It is possible thatthis delay could have been caused by early life trauma; I mean, heaven knows how the operation must have seemed for him at the time, as if being born isn't traumatic enough.
In the early days we read much about the TOF condition and also of what to expect of your TOF child in terms of food and eating. But for the most part Louis seems to buck the trend on the food issue.Yes, he does get the odd thing stuck and yes he is sick many times but it doesnot seem to diminish in any way his love of food. Now he has all of his teeth we think that he must see all types of food as a challenge for him! Give himanything and he’ll eat it, or at least have a very good go at it. It was this summer in a burger joint on holiday in Turkey that we discovered his penchant for cheeseburgers (with fries and a coke). Of course we love that he loves food and hope that it continues all his life.
Louis does seem more inclined than other children to chest infections and we read that this is not out of the norm for TOF kids,even our GP knows the drill and now has too got used to discerning thedifference between a normal Louis chest sound and one with an infection, it's now easy for him to distinguish between his normal slightly raspy sound and the gravely chest infection sound we too often get.
Encouraging outlook
Louis is hopefully on the road to a more or less full recovery TOF-wise, we hope. As for his other development issues, well, weare doing our best with him at this time and can do no more, we just hope thatwill sort itself out as he grows up more. We found out about the TOF Charity very quickly and registered on their website, and we find the CHEW magazine to be a wealth of information. It has been a constant source of hope and inspiration to both of us over the months and years. The TOF Facebook forum page has also been of particular help and interest for us also. We intend to become even more involved with events in the future
