hi Michelle, i have a 2yr old son with charge.Joseph has had and still has many of the problems associated with charge includinghaving open heart surgery to repair 2 vsd and to correct transposition of the great arteries.He had surgery to correct a large eppiglotus in his throat.joe also had bad reflux and a hiatious hernia so had a fundoplication and has a gastrostomy for feeding as he has an incordinated swallow.
Joseph spent the first 10 months of his life in Birmingham childrens hospital where the doctors. nurses,surgeons were fantastic.
Despite all his problems Joe is such a happy,typical 2 yr old even though he can not talk or walk,we have learnt makaton as he also has a significant hearing loss,he can probably do about 60 signs,joe also gets where he wants to get by crawling,and boy can he go fast!
The main reason Joseph spent so long in hospital were poor oxygen levels dipping down to the 60's were a regular occurance,and also copious amount of secretions.Joseph is still on oxygen overnight with saturations anywhere between 80 and 100 with 4 litres of oxygen.The consultants have said the main reason for his poor oxygen sats are his secretions.We have just started using hyacine patches to try and reduce the secretions(LAST SUNDAY)i'll let you know how we go.
Joseph also has small genitals for which we've had some success using testostorone,and also bialatrial coloboma for which he wears glasses.
Joseph has amazed the doctors with his progress and is our little miracle.At times we didn't think he would pull through but he did and we don't know what the future holds but with joes courage and determination we will cope with anything.
If anyone wants any more info on any of Joes treatments i'll be happy to help.