This visit actually happened in mid December but due to our (still!) sleep-deprived, fogged up minds we are only getting around to writing now.
It is rather overwhelming to exit the lift on the 3rd floor of block S in the Queen Mary Hospital. We were there to visit the Cleft team who have clinics every second week but the floor was crowded with patients waiting to see surgeons from all different fields. We registered and took our seat and it wasn't long before Ultan was being treated like a rock star when some older children who have had their cleft repaired noticed Ultan's wide smile and smothered him with attention. From this, other fellow patients were nosey to see what was all the excitment in the pram and voila, Ultan is surrounded and he loves the attention from all and sundry, giving it loads with his cooing :)
We didn't have to wait long to be called and first thing I noticed was Dr George Li who is the plastic surgeon who performs the cleft repairs was not there. Dr Joseph Chung (I think!) was filling in for him but he does not do cleft repair. Anyway, as I sat down Dr Chung examined Ultan for the briefest of moments - I had not even put my bum on the seat when he announced, OK, we will see you again in two months - WHAT?! we have been waiting to meet this team since July and this is it!!!
I didn't even get to say any of that as Mark had jumped in and asked the surgeon to hold on, could everyone introduce themselves and explain why they are in the room. We went around the room starting with plastic surgeon Dr Chung, Antonio Tong and his team from Dentistry and beside me was Ms Wong, feeding specialist and speech therapist. Mark and I straight away pounced on Wong (because we had asked for a feeding specialist and were told Queen Mary didn't have any) - we asked why she hadn't come to see Ultan when he was born. I could go on with this conversation but frankly she annoyed me with her snigger of how well Queen Mary organise the feeding of cleft babies. We were obviously talking about two totally different hospitals because her view of how her field is run in the hospital was not my experience only two weeks prior and when I explained my experience she actually told me I was wrong. I had a choice to have it out with Wong or focus on the task in hand that was to discuss Ultan's treatment now. It has become apparent throughout that while QMH does indeed have experts, getting access to them or how they deliver that expertise is sorely lacking, at least in our case....
We explained to Dr Chung how we (and all cleft babies) had such a short window to get Ultan's treatment plan correct so we would like to discuss what was the best plan going forward for Ultan.
1. The NAM - would Ultan require this? Both Antonio Tong and Dr Chung didn't think Ultan would benefit from it.
2. Taping - again Dr Chung did not feel Ultan needed this as although Ultan has a wide gap, you can pinch the two sides of the lip together easily.
I have to say, I came out with mixed emotions over this visit. I was really glad to meet Antonio Tong Head of Dentistry, who was extremely pleasant and very professional to deal with and I do hope he will be looking after Ultan in the future. He actually had a feeding plate with him for Ultan but all of us agreed that Ultan did not require one.
However, yet again, I was extremely disappointed with the Plastic Surgical team. I found the Plastic Surgeon to be condescending and he was frankly disinterested. I would love for him to understand, to empathize with a parents wish to get the very best for their child and in order to do that they have to rely on the expertise of medics and it doesn't make it any easier when the medic is disinterested in discussing their patients/your childs treatment plan.
We walked out and Mark and I decided there and then we would not be able to use the Plastic Surgical Team from Queen Mary because we found it too difficult to communicate with them. but also they are supposed to be the acknowledged experts, yet they provide no support or information, especially in the pre-natal phase. Ultan's surgical treatment will be delivered elsewhere.
If we have any advice we can give to parents out there, is please do not be in awe of a doctor or other medical professional, who proclaims to be an expert on something. It is all too easy to take as gospel what a doctor might tell you. But we recommend that you go to every medical appointment armed with questions that you need answers to make you feel comfortable with your child's treatment plan and who will be involved in it. Keep asking those questions until you are satisfied. If they are not answered satisfactorily, then make a fuss, ask more questions and do not be fobbed off. If you are fobbed off, if you are in a position where you can do so, then vote with your feet and go elsewhere or, at least, seek a second opinion. Trust your gut instincts....
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