Hi there, I just wanted to chat to people who can help my little boy and myself on his journey.
Alex was born with what the doctors are calling hypoplastic palsy. He is a twin and both he and his brother came out naturally, no forceps ,no birthing difficulties, even the pregnancy was fine. On the day Alex was born I noticed something was quite right. I was a mother already before my twins so I knew what a newborn should be doing. Alex couldn't close his eye. For a newborn this was different! I mentioned it to the nurses and they put it down 'just being born' etc. 1 month down the line, I am telling health visitors about his eye and they said not to worry it is a lazy eye see the doctor when he is 6 months. At 3 months I noticed Alex could only smile one sided. with that and the non closing eye I really started to get concerned. Once again everyone is telling me he has a lazy eye, just developing slower, wait it out. At this point I am getting annoyed as I feel everyone is ignoring me and what my instincts are telling me.
To cut a long story short, by 6 months it is clear Alex has palsy. Though it took a kindly doctor to finally hear me, and my rant over being disregarded about my concerns for my son. Alex was referred to the hospital and it showed he had an under developed nerve (can't recall the name) that stopped his right side from moving, smiling, blinking etc. After a lot of apologies they finally sent Alex to a specialist at our local hospital. As well as an eye specialist. The specialist at our local hospital didn't inspire me with confidence so I asked to be referred to John Radcliffe Childrens Hospital to see their specialist. The doctor was pleasent enough but could not give us the answers we wanted. Why this happened, what will happen in the future etc so I got us referred to Great Ormand Street hospital so see their specialist. And I am glad I fought my way to one of the best childrens hospitals in the UK! The doctor has a special interest in facial palsy from birth, and has given us some answers we needed along with the reassurance that he can help. On our last trip there he has informed me they are (and have now) creating a clinic dedicated to this!!
Alex will eventually be having surgery to help him gain a full smile, using one of 2 methods. Nerve replacement or muscle replacement. This to be confirmed at a later date. He won't be having this surgery until he is around 7. The doctor has said that around that age other children pick up on differences and this can create bullying. So he wants to help before this.
Alex has speech therapy though his speech has improved thanks to his twin Ben who is a chatterbox.
Alex has started nursery so I have had to inform nursery teachers his condition and asked them to tell others who come into contact with him, as I noticed people do stare at him. Which I obviously hate!
I have started to explain to Alex and his brothers about the palsy though he would rather run off and play, so I can't decide when to really start talking to him about it.
I just wish I can understand what caused this, I know he has a weaker nerve but I would love to know why. Sadly this is something nobody can answer!
Anyhoo that's my Alex's story so far.