A Cleft Baby

12 O'clock.

So, on the 27th of February we went back for my follow-up morphology scan. I was holding our hope that our little Peanut would be more cooperative, but we were not in luck. The little guy had both arms in front of his face, and was also hugging his umbilical cord, which made it really hard to get a good look at this face. We did manage to get three clear images that have changed our lives forever:

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Peanut definitely has a cleft lip. At the 20 weeks scan it seemed like it would only be unilateral (one side), but this scan confirms that it is in fact bilateral (both sides). At this stage, there doesn’t appear to be a cleft palate, but the ultrasound technician warned us that it wasn’t uncommon for a cleft palate to go unseen on an ultrasound. His nose and septum also appears to be unaffected, but we likely won’t know the full extent of the cleft until he is born.

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In some ways I feel much calmer for being certain. There is no more hoping, or finger crossing that things might be different – they are what they are, we can’t change them. There are no more contingency plans in my mind for different babies, only our plan for Peanut. We can plan, and be as prepared as possible for the baby that we are having, and the difficulties that he will have.

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In other ways, I feel like the wind has been knocked out of me. I never imagined having a child with a cleft, especially not after we had Ivan & he didn’t have one. I have a lot of mental baggage from the experience of having a cleft myself, and it’s hard not to let that colour the way that I feel about Peanut’s cleft. I find it incredibly distressing looking at medicalised images of children with clefts, probably because I have seen images like that of myself and they associate in my mind with pain, discomfort, shame. I’m having to confront the fact that I don’t feel positive about having a cleft. I feel like I got stronger in spite of being cleft-affected, not because of it. I have years of memories of bullying, rejection & humiliation to teach me that no matter what I do for my child, some people are always going to be cruel. I don’t handle confrontation well, and I’m not very good at sticking up for myself. I am incredibly anxious about having a child that is going to need someone to teach him to feel positively about himself, and to stick up for him when people (and the system) are cruel, when I struggle with doing those things for myself.

I’m also pretty torn up about parenting. With Ivan, I suppose that you could say that despite an early return to work out of necessity, Shannon & I are quite “crunchy” parents. At two years old Ivan still cosleeps with us, and will continue to do so until he indicates he’d like to move into his own room (he has one set up & ready, he just isn’t interested yet). I breastfed Ivan on demand for almost 18 months, and would have been happy to do so for longer, but he weaned himself. We never used cry-it-out/controlled crying methods, implemented a feeding schedule, or worried about how many times a day we held him. Ivan has never spent a night away from me, or a longer daytime period than my work day. We don’t own a cot, or bottles, or other associated bottle feeding equipment. If Peanut has a cleft palate though, then breastfeeding conventionally will be off the cards for us (though I can still express breast milk and bottle feed). I’m struggling to find sources of information that say whether or not it is safe to sleep with an infant who is consuming breast milk, but not being fed from the breast – and the evidence is strong that it is unsafe for a mother to share a sleep surface with a baby that is formula fed. I’ve seen a lot of talk in my research about getting cleft babies onto feeding schedules quickly to monitor their weight gain, and make things easier for operations.

So much anxiety in my world right now. At this point, I’m edging into my third trimester of pregnancy, and I’m feeling totally unprepared – I don’t even know where Peanut will be born right now. I have an appointment at a major hospital in Brisbane next week for further scans & an obstetric assessment, and I have no idea what I’m likely to be told. I worry about being bullied into a birth experience that I don’t want. I worry that Peanut will be taken away from me too soon after he’s born for observation. I worry that I will be disgusted or repulsed by my baby. I worry about not bonding with Peanut as well as I did with Ivan, and I worry about bonding with him more than I have with Ivan. I worry that I will never be able to let anyone else look after him, because I’m scared of how they will treat him. I worry about surgeries, I worry about reactions from other people, I worry about our finances. I worry that I won’t be the strong mother for Peanut that my Mum was for me. I have so many things on my mind that I don’t even know how I can hold them all, and how my brains don’t just come spilling out my ears.

I saw the GP a few days ago though, and she said something that made me feel a little better. “However you’re feeling right now, that’s perfectly natural. But if you’re having a really bad day, then just remember – you survived.” And I suppose I did.

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