{Guest post} Louise – Cleft palate

Today’s guest post comes from one of my online friends, Louise.


We always knew that when we started our family, we didn’t want a huge gap between the children so were thrilled when we found out we were expecting number 2 (D2) when Will was 13 months old.

The pregnancy progressed exactly like my first but was under consultant lead care as I delivered via emergency section the last time.

We have no serious health issues in our families and I don’t know about anyone else but you don’t go into the scan expecting to be told anything apart from the sex of the baby during the 20 week scan so when the abnormally scan picked up a bilateral Cleft Lip it was like someone had pulled the rug from under us.

They took us to what I call the bad news room, a room of neutral calming tones, comfy sofa and box of tissues and were told that it was ok the surgeons would do a great job of repair …….. Sorry ??? surgeons???? A what now???

We had to wait a whole week to have it confirmed by the consultant that it was a unilateral cleft lip and although they couldn’t tell we should prepare ourselves for the baby to have a cleft palate also. Almost as soon as we were diagnosed we were contacted by the local cleft team who would be taking care of us after D2 was born and we were given a good understanding of what we should expect in the coming months.

The following 4 months went in a blur and during which I went through almost every emotion imaginable including a sort of grieving process for the ‘perfect’ child which now seems incredibly crass and melodramatic. However, I think it was me I was feeling sorry for as a cleft meant breast feeding would be nigh on impossible and as I had such a hard time the last time had been looking forward to knowing what I was doing this time around!!

D2 arrived 13 days late, induced and once again delivered by emergency c section as I was losing a lot of blood (1 litre in the end). We were introduced to this 8lb 12 oz of boy who looked almost identical to his big brother apart from the obvious gap in his upper lip. It was a huge shock to see even though we were expecting it, and I’m sure this feeling will continue for some time although it has no bearing on how gorgeous he is and how much I adore him.

We called him Samuel and were visited in hospital by one of the cleft nurses who gave us 3 specialist bottles to use to feed him. Initially I despised them but quickly got over this and realised Sam needed feeding regardless of how so I needed to suck it up and get on with it. The cleft team understood my need to breastfeed so have provided me with my very own milking shed (or as good as) in the form of a hospital grade medela pump, it’s hard to find the time to pump but at least he is benefiting from my milk as well as formula.

So where are we now? Well we have seen the surgeon who is pretty much the best in the country and spends a lot of time completing cleft ops in India for charity, so he’s a great guy too!

Sam will have to have two operations the first we anticipate to happen when Sam is 3-4 months old to repair his lip and the hard part of his palate and the second when he is 6 months to repair his soft palate. Which apparently afterwards may mean he will latch for me (if it’s only for a week I will be thrilled!)

He has been diagnosed with glue ear which is the preferable reason for why he failed the newborn hearing test which is normal for cleft babies and we are awaiting a date for his first operation, it’s going to be a tough year but we will get through it as a family!

We will keep you posted on our progress

Lou xx

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