When I was pregnant with my second child I was so excited to find out if they were a boy or girl and to begin a brand new breastfeeding journey. I already had a little boy whom I had breastfed for little over a year. However, my excitement soon turned into trepidation at the 20 week scan when we were told our baby had a cleft. I began to worry about lots of things, including breastfeeding a baby with a cleft – would it be possible?
An unexpected cleft diagnosis at the 20 week scan
Harvey’s cleft was diagnosed at the 20 week scan. We were excited to find out whether he was a boy or a girl and we were hit with the news, which at the time felt devastating. It felt so strange to be told that your baby wasn’t “perfect” and would have a facial and possible palate defect.
It felt so strange to be told that your baby wasn’t “perfect” and would have a facial and possible palate defect.
We were also advised at this stage about the high possibility that he might have other complications associated with development or the heightened possibility that he would be born with Down’s Syndrome.
A split second after feeling devastated, I suddenly felt this overwhelming sense of relief that it was “only” a cleft lip at this stage and not something more serious or life threatening… getting that kind of news must be truly overwhelming… and there followed the feeling of guilt that I had felt all of these things, when so many parents go through this sort of scan with much more devastating news.
Soon my focus turned to breastfeeding a baby with a cleft
It was a rollercoaster of emotions! Then, as a passionate breastfeeding mamma, my focus turned to feeding. Breastfeeding my first, Harry was such a huge success, one of the hardest yet most rewarding and wonderful experiences, I loved it. Harry fed for 13 months in total.
I was so excited to breastfeed again, and being told that this might not be possible or if it was, would make things hugely challenging made me feel so sad. Ultimately, all that matters is that the baby feeds in some way, I know this…However, I am passionate about breastfeeding and I therefore, committed to do whatever it took to ensure Harvey got my breastmilk, for as long as possible. If that meant pumping to feed then I was willing to give that a go. Admittedly, this would have been massively time consuming and perhaps impractical, considering I was a mum of a toddler already.
We didn’t know if his cleft lip would effect his palate
As the pregnancy progressed it became clear that the cleft was bilateral (meaning two grooves in the top lip); we were hoping to find out whether the cleft had effected the soft/hard palate as well as the lip. We had numerous scans with differing opinions, nothing ever certain and finally an MRI at 34 weeks; unfortunately that came back inconclusive.
It became clear that the cleft was bilateral
So it was a total surprise to us on his Birthday that it was in fact just his lip and not the palate. This was a massive relief having been told that even though a cleft lip would prove challenging with breastfeeding, breastfeeding with a cleft palate would have been almost, if not completely impossible. I was over the moon.
Harvey latched on straight away with no problems!
Ironically, Harvey latched straight away, even better than Harry had with his fully developed lips, and continued to latch and feed with no problem at all. Not once did I need to express, only to relieve a little mastitis, and later on post surgery for a few hours, but nothing associated with his cleft. What a dream!
I used a rugby ball hold in the beginning because this seemed to help with his latch. A little of the milk escaped (and bubbled, quite cute actually) through the top of his little mouth when he fed, particularly on the side that was a deeper groove, but nothing major and it was still a complete latch.
Soon we had to progress to upright feeds
I had to progress to upright feeds because he developed Silent Reflux in the first two weeks which developed into Reflux after another 10 days. The upright feed seemed to help with that. We actually dealt with Reflux for 11 months in total… that was exhausting! So much sick!!
He developed Silent Reflux in the first two weeks
Advice for new mammas out there facing this type of breastfeeding challenge, I would say, read up on the differences between cleft lip and palate… understand what might and might not be possible to prepare yourself mentally. However, until the baby is here you won’t really know what condition you’re dealing with; every baby is so different, what works for one, might not work for the other… cleft or no cleft, they are so unique!
All cleft surgery had stopped due to lockdown
Unfortunately Harvey was born right at the start of the first UK lockdown (Covid-19) and all surgery stopped. It didn’t resume for 6 months and at that point we were due to move (an International move from the UK to Cyprus). Therefore, we weren’t able to have surgery through the NHS, we went privately. Dr Brian Sommerlad operated on our Harvey in September 2020 at the Portland Hospital in London. Going privately was a great move for us. I have no doubt that the Spires Team would have done a brilliant job on Harvey’s lip repair, but Brian’s work is that of a genius, you can’t tell Harvey was a cleft baby, he has a scar, but that will fade with time, especially if my tireless application of Bio Oil and massage has anything to do with it!
Harvey was 6 months when he had his surgery and it was the scariest thing I’ve ever been through. Putting him to sleep and waiting for him to wake up again was like torture, but he was in expert hands. Unfortunately due to Covid regulations, we had to go through it alone, no one else was allowed into the hospital with us. Thankfully everything went without a hitch, the team at the hospital were fantastic.
I was worried how Harvey would breastfeed after his surgery
I was really worried about Harvey re-latching after his surgery, but I need not have worried, he latched beautifully again and continued to feed really well. We had another month or so of exclusive feeding before weaning.
The only stressful part about feeding post surgery was that it took him about 30 hours post surgery to feed. He wanted to a couple of times during that period, but it was clearly too painful and uncomfortable therefore, he waited. It felt like a lifetime; but, in true Harvey style he fed when he was ready, when we arrived home from the hospital, perhaps he just wanted home comforts!
The only stressful part about feeding post surgery was that it took him about 30 hours post surgery to feed.
We breastfed for 15 months, exclusively for 7 months and then started weaning with solids, slowly regressing the feeds until we were only feeding before bedtime before finishing. I fed my firstborn, Harry for 13 months too… so I really have been lucky enough to have had two successful experiences with breastfeeding.
If you facing something similar, use all the support offered to you
It’s easy for me to say now, and even then… because I was a second time mum, but TRY to relax, worrying and stressing will not help, it will only make things worse. Use the support offered to you, join support groups in person or online and ask as many questions as you want! The help and support is there, sometimes you’ve just got to look for it. And girls, if you need to cry… have a good cry and don’t feel guilty about it! If that’s what you need then go for it!
In terms of medical support, the NHS was truly fab. We were assigned to the Spires Cleft Team, based out of the John Radcliffe Hospital in Oxford. My Cleft Nurse, Emma, was a truly amazing support to me throughout pregnancy and beyond. She made visits to my house to talk me through EVERYTHING, listened to my fears and worries, let me cry and didn’t make me feel ridiculous about that, allowed me to ask what I thought were the silliest of questions and mentally prepared me for due date with a cleft baby. She assured me she’d be there on the day Harvey was born, or the day after, and she WAS!
Emma offered me the support and advice I needed about breastfeeding and also bottle feeding (which also would have been a real challenge for Harvey and me, with specialist bottles and all sorts)! Seeing her that day in March and showing her my beautiful boy’s face and sharing the news his palate was fine, really was a great moment. She made calls on the first few days at home and after a couple of weeks to check that feeding was still going well and gave me more wonderful advice on how to reduce his scar post surgery.
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