StarGirls cleft lip was found at our 20 week scan. It was a shock, after already having had 3 scans and thinking she was fine it was a little scary. (They also found a hole in her heart at the same time)
I went away unsure, scared, I'd never really heard of cleft lip before and didnt know what the future held operation wise or what they would do next. I was passed from midwife led care to consultant and midwife shared care.
The scans showed a unilateral cleft lip, all scans after showed a unilateral cleft, even the 3d ones.
It took a few weeks to be referred to the cleft team, in the end I contacted them directly, they didn't even know about us as the referral still hadn't reached them! They came to see us a few days later.
The nurse who came to see us was brilliant, she explained the basics about feeding, operations and gave us 2 feeding bottles to begin with.
When StarGirl was born I didn't see her for about 30 minutes (Emergency caesarean and both of us were ill, they took her away straight away to check her over) when she was finally shown to me we saw she had a bilateral cleft lip. Something all of the scans had missed!! She also had a cleft in her palate and a gum notch.
Feeding wasn't the easiest to establish, she couldn't suck so the cleft bottles needed to be used definitely, and I was too ill the first few days to be able to feed her myself each time. I did feed her a few times when I wasn't hooked up to machines.
We got on well with feeding once we were home. Hardest bit was how much milk as she was quite sicky the first few weeks, so was little and very often!
The lip repair was at 20 weeks old.
It's stressful any time your child has an operation, but especially when they are so little!!
We were admitted Wednesday, they did all their checks, they took surgical photos, and we signed all the forms.
That night I tried to feed her the last feeds, but as she was used to sleeping through by then it wasn't easy.
Morning came and it was so stressful. I took her down to the theatres in her pram, saying goodbye for a few hours after she's had the anaesthetic was so incredibly distressing. And despite many operations since it doesn't really get any easier.
The hours waiting took forever, but finally I was able to pick her up from recovery. She looked like a different child, she sounded like a different child. It was hard recognising her as my own. If it wasn't for a little piece of wax in her ear I'd seen that morning, I wouldn't have known she was her.
(They told me the sound of their cries is different after palate repair, but the sheer difference just with the lip was incredible. Took weeks getting used to her new cry.)
The next 24 hours in the high dependency unit was tough. She was in pain, and hurting and there wasn't much I could do apart from hold her. When she's on iv fluids she refuses to drink, every time, so we didnt know if she would take the bottle once they were disconnected.
She was allowed off all the machines by Friday morning, started bottle feeding again within a few hours, and we were home Saturday!!
The next few weeks were full of structured feeds and routines and pain relief. The lip also needed cleaning regularly.
After a few weeks she needed to begin lip massage, to break down the scar tissue. This was very tough as she was still visibly in pain and hated it, but it had to be done.
It was just a case of waiting for the palate operation then.
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| Before the lip repair / straight after the op / a few hours after / less than 2 days after |
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| 9 days after op / 2 weeks after / 3 weeks after / 4 weeks after |
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| 1 year after op |
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| 2 years after op |
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