Hi, my names Kelly and myself and partner Bradley are Mum and Dad to 3 and half year old Bailey and 8 month old George.
2. What type of cleft was George born with?
George was born with a right sided cleft lip and palate with gum involvement. His palate cleft is actually nearer bilateral than unilateral.
3. When did you find out about the cleft?
We were first told about George’s cleft at the 20 week anomaly scan. We had gone to this scan completely full of excitement and fixated on 1 factor: Boy or girl, pink or blue, brother or sister. It had never even occurred to us that anything could or would be detected. We had no family history of clefts, or any birth defects so it was a complete shock and surprise to us. It was upsetting, to the point we almost forgot to ask the sex which only an hour before had been the most important factor.
From the scan, we were told we would meet with a consultant at foetal medicine who would scan again and reassess the situation. This was about 2 days later, and she did indeed rescan and confirm the diagnosis. We spent a lot of time from then researching and learning about how our baby would be different and how we could best prepare for that.
4. What type of birth did you have?
We opted for an elective Caesarean Section, purely because Bailey took a very stressful 4 day induction to arrive (via unplanned section) and with him now being a childcare factor we thought a date in the diary would work best for us. Equally, I am a planner, so being able to advise the cleft team when the baby would be here so they could come and do the feeding assessment as soon as possible felt like a weight off for me. I did think having an elective, having already experienced a non planned section, would also remove all the fear and anxiety. Little did I know, I was actually more worked up and it all came to a head walking into theatre. I had an emotional breakdown and could not stop crying throughout surgery prep or the birth.
5. How was Geroge fed to start with?
After birth, George was assessed by the cleft team within a few hours. She decided he could swallow safely and to proceed with the Dr Browns feeding bottles. In brief, these are normal feeding bottles with the anti colic tubing. What makes them different is a little blue valve that sits in the neck of the teat and creates a 1 way flow for the milk. Baby then just chomps on the teat,
releasing the milk without having to suck for it. We had never felt so proud and relieved that George had managed to take to bottle feeding so well and avoid a stint in NICU on a feeding tube, which had been a fear of ours.
We were discharged home at 2 days old but at our 7 day check, the midwife felt George had lost too much weight and was acting like he might have an
infection of some description. We were sent to hospital to meet the paediatrician for routine bloods and a possible overnight admission. Panic set in, what ifs running round my head, have we done wrong by him already. No infections were found thankfully but it was decided George just wasn’t feeding enough. The effort involved in him to feed was using more energy than he consumed so an NG feeding tube was inserted and we started the process of learning to tube feed. The doctors felt it was best to stick to offering the bottle first, so George didn’t lose the technique but if he hadn’t completed it within a period of time, then to stop and to top him up via the tube. Before we could be discharged, both Bradley and I had to be signed off as competent in tube feeding. To achieve this we had to be observed giving 5 feeds each by a nurse. Difficult, when Bailey contracted a sickness bug so couldn’t come to the hospital leaving Bradley unable to demonstrate his feeding.
We were later discharged after 4 nights with all the skills to bottle feed and then top up as required via the NG tube. This meant leaving the house with more kit and paraphernalia than you can imagine! We had bottles, spare tubes, syringes, pH testing strips all to be washed and sterilised. We found trying to get the correct pH level (tested to ensure the tube is in the correct place and not moved between feeds) so hard. It was taking an hour to feed 3oz and then as soon as it was over, it felt like time to start all over again, including through the night. It was tough.
Luckily George’s tube wasn’t to be around for long, it was removed a month later almost to the day. George had been put on a high calorie formula by the dietician by this point to allow for his weight to catch up. He remains on this now. The early days were very much “surviving, not thriving" but we’re out the other side (fingers crossed).
6. What surgeries has George had?
George had his lip and hard palate surgery 6th January 2020. Our local hospitals do not specialise in cleft surgery so we were under the care of The Evelina children’s hospital in London. We had to go up once in November for his pre op; Bailey came with us that time to try and help the understanding of George going to hospital to have his lip fixed. We then travelled by train the day before and stayed the night in hospital accommodation to allow for being at the ward for 7am on the day of the op.
The surgery itself went smoothly. After a few pre checks on the ward, we walked him down to theatre. Originally, we were told only 1 parent would be able to accompany so we were flipping a coin of who had to endure the hardest task but we were relieved to be told we could both go down. So once there, George lay on a bed and they used the anaesthesia to put him to sleep they explained he would cry and fry to fight it, but he did eventually go off. Whilst he was away from us we went for a walk and to get some breakfast. Advice given to us before we went was to not stay at the bedside, it just makes the wait longer.
We were told he’d be gone about 3 hours so we headed back after 2 and half to be sure. I did not want to be the family that goes AWOL and baby is in recovery alone! 4 and a half hours after we left him, the ward got the call to say he was ready in recovery!
My first reaction was shock, he was awake but not with it at all. The nurses kept saying how he’d been fine, really good in fact by not crying, but that just made me think he must be out of it still. His head was big and fat and swollen. He didn’t look like George AT ALL. His scar was prominent, but also lost in all the grime of hospitals – tape adhesive, wires, blood, gowns! It wasn’t where my eye went first. Which in itself was weird. Recovery was slow but steady, typically George! We had to stay in an extra night because he was slow to feed and just wanted to sleep it off.
Fortunately, the cleft nurse on day 2 who was responsible for permitting discharge was our own nurse from home, who knew George would refuse food at the first opportunity so knew he wasn’t going to drink 50% of his normal feeds just hours after surgery. So we caught the train, and headed home.
Before the current pandemic, it would be routine for George to be expecting his second surgery, soft palate repair anytime soon bit for now we'll wait and see.
7. Have you started weaning George yet?
Weaning has well and truly started with George. We waited until he was the full 6 months, purely because I knew it wasn’t going to be straightforward. From soon after his lip repair, George was put on a cows milk protein allergy (CMPA) diet. We changed his formula and it appeared to work immensely. So I knew weaning would be tricky - avoiding dairy isn’t impossible, but it makes hard work of the food shopping.
We started as we did with Bailey, a soft start with baby rice and fruit puree, then a combination diet of Baby led weaning (BLW) and more soft foods. To start with, it wasn’t a roaring success. He didn’t appear to have lost the reaction where baby sees a spoon and just pushes it out with their tongue. And anything that did find it’s way into his mouth, just reappeared streaming out his nose which in turn set off sneezing and upset. There seemed to be something wrong with all the foods we tried – toast too claggy and stuck like glue to his palate, puree too runny, solids too dangerous. But, just like everything, we persevered and overnight seemed to turn a corner. Maybe it coincided with the reintroduction of dairy, maybe it was just an age and developmental thing.
George is now on 3 meals and 4 bottles a day. Foods we tend to go to include thickened fruit puree with baby rice, rice/corn cakes with cheese spread, roasted veg fingers – parsnip, carrot, sweet potato, bread sticks, rich tea biscuits, cucumber sticks and veg straw/puff crisps.
8. How did your family/friends react when you told them about the original diagnosis?
This is a difficult one. Everyone in our immediate family, so parents, grandparents, siblings were as devastated as we were. But I don’t necessarily think this is because of the diagnosis, more because of the way we reacted and they were sad for US, more than the baby. Once we’d started to get our head round it a bit, everyone said he would be beautiful and they couldn’t wait to meet him.
Some were very positive with comments like ‘it could be worse' ‘they do incredible things now’ ‘once he’s fixed, you’ll never know' but these were the ones I found more infuriating. Yes, it could have been a helluva lot worse, but it could have been better. My child is still having to undergo surgical procedures as a baby, and that’s a hard hand to be dealt. But all these comments were meant with good intent so tried not to show just how I felt. Tried anyway.
And some really were completely nonplussed. My 17year old brother asked my mum was the baby going to die? Was I going to die? As the answers were both no he really couldn’t see what the fuss was all about. What was quite apparent was everyone suddenly knew someone with a cleft connection be it a friend, neighbours grandchild, work colleague and that was a bitter sweet pill to swallow too. Great, you know what we’re talking about, you have a cleft connection but really, can we not even have a moment to comprehend this without everyone around us seemingly becoming an expert and knowing more than us.
9. Had you heard of a cleft before diagnosis?
Turns out we both knew people at school who had a visible cleft scar but hadn’t really linked that it could happen to anyone and you would find out antenatally. It wasn’t mentioned at any point that it was something they were looking for at that scan.
10. Where do you live?
In a house, a very big house, in the country!! Sorry couldn’t resist.
Thank you so much for sharing your story, Kelly! And now I'm going to have to search for some Blur on Spotify....!