Today’s post is an extremely personal and moving one from reader Rhiannon who discovered her baby had a cleft during the anomaly scan. These scans are normally an exciting time to see your baby again but can also be a very scary time should there be any issues. We are so pleased that Rhiannon shared her story with us as we hope it may bring comfort to others in the same situation but also because it shows how amazingly strong she is. I’ll hand over to Rhiannon to tell you more.

‘1 in 700 babies are born with a cleft’, said the screening nurse. ‘It’s really quite a common defect’.



By the third month of pregnancy, I had already had three scans.
The first was a seven week scan to check the viability of my pregnancy. You see, I had already been pregnant and un-pregnant rather quickly back in the November, so I was delighted to see our little seed’s heartbeat pulsing away.


My old anxieties returned around week 9 and I lost any pregnancy symptoms I thought I had. We paid for a private scan just to check and again everything seemed fine.
 Still, I panicked and read about missed miscarriages, conditions that they would find at our first ‘official’ scan, but the time finally came and there was seed lying on her face with her bum in the air (a position she repeated at every other scan we had). The sonographer measured her and checked for major structural abnormalities. We came away satisfied that everything was on course and set about sharing the good news with our closest friends/family.



We were booked to go away to a friends’ wedding abroad the week after our 20 week anomaly scan, so I was glad at the time to be ‘getting it out the way’ before being able to relax and enjoy the occasion.


We turned up an hour early (not easy with a bursting bladder) before being told they had messed up our appointment. They begrudgingly squeezed us into a 6pm slot and rushed through the necessary checks, but they couldn’t see her face or heart valves and her femurs were measuring below the 5th percentile. As usual she was bum up in the air and wouldn’t play ball, so the nurse asked us to come back the week after. The wedding was beautiful, but I couldn’t let those niggling worries dissipate and although I tried to shut them down, they kept bubbling away.



Cue the anomaly scan part 2 when we arrived home.  ‘Heart valves are all fine…silence…femurs have dropped below the 3rd percentile…silence…I’m afraid I can see a cleft lip’. At this point my husband let out a deep guttural sound and I burst into hysterical sobs. I had no idea where either sounds came from; I just know I never want to hear them again. I also remember clutching at the sonographer and not wanting to let go. She held me for a while and then helped me off the table and took us into a counselling room.



The next hour or so passed in a haze. My lasting image was of a plant that needed watering and pale blue walls that seemed to absorb our questions and then silence. I kept thinking of all the tears shed in that tiny room and it made me ache. The screening nurses gave us leaflets/info/cups of tea and the sentence ‘It could be more than a cleft, we have to make sure’.



I had another scan that day performed by a senior consultant who confirmed a unilateral cleft lip ‘probably on the left side’. She then ran through what else we might be facing because of the other ‘soft marker’: short femurs. The words ‘Edwards syndrome, Downs, Turners’…swam around meaninglessly. I was advised to have amniocentesis the following day, despite my blood tests having showed I had a 1:4600 chance of my baby having one of these syndromes, pretty low by any standards.
The amnio was performed successfully, we watched our little seed recoil from the giant needle being stuck into her amniotic sac.

Then began the very long wait until the results, made worse by the fact we had an additional two day wait because of the weekend. We were allowed leave from work and tried to pass the time.


The first set of results came back on the only rainy and stormy day of that week, and during the only hour my husband had left my side. We were lucky…they were clear for Edwards, Downs and Patau. We had to wait an additional two weeks for the remaining results but we were lucky again; they were clear. It may just be the cleft in isolation, she may just be a small baby. We had to have growth scans at 28 and 34 weeks to check. I found myself irrationally angry about not being able to ‘protect’ her. I’d never smoked, had always been healthy and active and we have nothing in the family that would suggest we were high risk. I watched pregnant women smoking outside the hospital and quietly seethed.

One of the best sources of information we were directed to during our Cleft research was the CLAPA website and we quickly found out that we could qualify for a free 4d scan between 26-32 weeks to see the severity of the cleft. My husband was very keen to have the scan, I was not. I didn’t want to go through another scan, didn’t want that sinking feeling when they might identify something else.
 I spent some time looking at images of varying degrees of unilateral clefts before I went. I felt if I prepared for the worse, I could somehow protect myself.


The nearest clinic to us was ‘Babyvision’ in Shrewsbury, a fantastic clinic housed in a converted barn on the outskirts of the town. I’d been concerned about seed being in her usual ‘bum up’ position, so I crammed a Mars Bar down my throat whilst in the waiting room. Lo and behold there she was dancing away when the wand transmitted the image back to the screen. Stubborn as she is, she lay with her left cheek against my uterus (where the cleft is). I didn’t see any of that though, because I couldn’t believe how beautiful she was; she looked just like my husband in profile.


At first we didn’t see the cleft and for one heart-stopping minute, I thought they had it wrong; that it wasn’t there. She shifted a little better into view and we could see it, though it wasn’t nearly as horrific as I had thought. Her nose wasn’t completely collapsed as you sometimes see and it was definitely just on the left side. 
We spent some time watching her suck her thumb, pull up her eyelid and then, with perfect timing, stick two fingers up at us, as if telling us she would like to go back to sleep and not have people gawking at her anymore.


We got two free print outs in colour, a strip of black and white images and a video to go home with. We treasure these massively, as we had not had those lovely scan photos before. It was nice to finally have some to show family and friends too, although they felt more sorry for the fact she looked like her dad than anything!



The one thing people kept telling us is how ‘common’ a cleft diagnosis is. I usually politely nod and agree, but inside I’m wondering where they all are. However, it was only from sharing our experiences that people would say to us, ‘Oh, my niece has just been born with a bilateral cleft’… and so on. 


About two weeks after our 4d scan my husband was in Pets at home, when he noticed a little boy with some faint scars above his lip. Being way braver than I could be, he approached the mother and explained our situation and asked if her son had also been born with a cleft. The mother was unbelievably supportive and gave him her phone number, chatted about their experiences and has since sent us photos and advice. We have been truly touched and encouraged by this and again has shown that support and friendship can come from the most unlikely places. We also later met some wonderful friends with a gorgeous little boy (who incidentally has the same cleft as our daughter) through a baby sensory class. We’ve remained close ever since.

Our daughter had her first operation when she was four months old and is currently a clever, feisty and wonderfully kind two year old; our absolute everything. She has to have one more operation when she is seven to fill in a gap in her gum. Of course we worry about future bullying she may encounter (if any); future risks we may have of another child going through the same thing, but we will address those things as they come. Sometimes now I forget she ever had a cleft; all you can see is a faint scar really. We make sure that photos of her before her first operation are around the house though. Once she pointed and said ‘Baby, poorly lip’ and I think that’s how we will tell her when she’s old enough.

So, this was our beginning; a journey into parenthood we never expected to take, but showed we are stronger than I ever could have imagined and provided us with the greatest little person who continues to teach us so much.