#MyCleftStory a year on, through the eyes of Casper’s mummy

May 8, 2019

#MyCleftStory a year on, through the eyes of Casper’s mummy

One year after she first shared her and her little boy’s story with CLAPA, Jemma got in touch to reflect on her family’s journey so far in celebration of Awareness Week 2019. 

Casper had his first surgery to close his cleft palate a few days after his first birthday, so by now it was a case of fourth time lucky!  The time leading up to this (4th) surgery had been a long, long wait, fueled with anticipation and uncertainty.

Casper at 3 months old

On the day of surgery we arrived at the hospital early in the morning, as we had done the three hopeful times before.  It was hard to believe that over 9months had passed since Casper’s cleft lip closure.  Since the first proposed date of Casper’s palate closure, we’d had good practice at preparing Casper; things like getting him used to a pureed diet for his post surgery recovery (as he was used to solid foods now) and moving Casper whilst he was still asleep into the car (as we would leave for the hospital early in the morning). We were now very familiar with the pre-surgery fasting instructions.  Along with things like what to pack for the hospital and preparing his two older brothers that they would be spending a night or two away whist Casper had his surgery.  At times like this I’ve always found it emotional. I would start conversations with his brothers to ensure their understanding of what was happening.  On reflection, I think it was also for myself as well as to ensure that my boys wouldn’t be worried or stressed out by a different routine.  My boys are a team, at times each others’ worst enemies, however they love unconditionally. They’ve certainly made me a stronger person, they’re so forgiving and accepting. When I ask them about how they feel about Casper’s surgery, they tell me it did concern them. They didn’t want Casper to be hurt, though they’ve always took everything in a positive stride.

Casper and his brothers!

“My boys are a team…when I ask them about how they feel about Casper’s surgery, they tell me it did concern them. They didn’t want Casper to be hurt, though they’ve always took everything in a positive stride.”

Arriving to the hospital ward, it is difficult to describe the feelings we had.  It was a mixture of hoping that Casper’s surgery would finally go ahead and that of my heart telling me, “He’s getting on just fine so he’ll be ok without the surgery, thank you very much”.

Rationally my head told me that in the long term it’s not fine, as there would be implications on his speech, eating and hearing, but my emotions took my breath away.  The ones that came all of a sudden that stopped me in my tracks.  The ones that came during my pregnancy and prior to his cleft lip closure, as my head and my heart played some sort of emotional ping pong.  These were the same emotions that made my heart beat out of my chest, as the unknown, although now somewhat familiar, played out in front of me.

“…the only thing I wished for was that it was me having surgery and not one of my children.”

It finally happened on 25th June 2018.  Casper was 1 year and 3 days old when his cleft palate surgery actually went ahead.  This time around, Casper was an older child to those on his theatre list, so his surgery happened in the afternoon.  So with time to burn, entertaining a 1 year old and being a highly emotional mummy was an interesting and tricky job. However, I did it and so did his daddy.  Now walking down what seemed liked really long corridors to the theatre with Casper in my arms, the only thing I wished for was that it was me having surgery and not one of my children.

Whilst he was in theatre the hours went by and they were so long; the weather was so hot and I felt so nauseous.  As we became aware Casper had been in theatre for coming up to 4 hours, we went to make him a bottle of milk and put it in a bottle warmer, so we would be ready when the theatre staff called us to recovery.  As the pager finally buzzed, Casper had spent over 4 hours in theatre.  He’d had his palate closure and also bilateral Grommets inserted into his ears.

Jemma and Casper on a day out together

When we came into the recovery room, Casper’s face was swollen from the anaesthetic and his eyes a bit puffy, though he soon took his milk and amazed us with how bright he was.  He was so alert to all the noises, as now his hearing was far clearer than before.  He made us laugh, stopping and pointing in the direction to all the monitors alarming and finally settled on watching ‘Ben and Holly’ on the TV monitor by his bed.  He’d never even been interested in television before!  This was a positive time for us. During our wait for the surgery Casper had seen his audiology team again, who confirmed that he had glue ear and that it was affecting his hearing. They liased with his NHS Cleft Team and between them they were able to incorporate Casper having grommets during his palate closure surgery.  This made me happy as it meant Casper would have one less anaesthetic and surgery.

Back on the ward it felt like Casper was far more unsettled than he had been following his cleft lip surgery and I didn’t feel particularly reassured by this.  With regular pain relief he settled and the next day managed the pureed meals we had prepared for his post surgery recovery, feeding little and often, as he had done before after his first surgery.  He made the most of the outdoor play area and we were discharged home within the 24 hours from the recovery room.  Once again, Casper amazed us by his strong willpower (though, I felt I needed to be extra vigilant in what he put into his mouth, as to not disturb the healing process)!

“What did that mean?  Did that mean Casper would need more palate surgery?  Did that mean Casper’s speech would still not develop?  Again, I was overwhelmed and hit by a pang of too many emotions and my role of mummy being tested.”

Unfortunately, 6 days post surgery, Casper was readmitted to the children’s ward at our local general hospital, with a temperature and cellulitis to his face and arm, secondary to chicken pox.  It was a truly scary time.  What had been a remarkable recovery so far which made this feel like a disaster.  It wasn’t where our cleft lip and palate team are routinely based, apart from when they hold their monthly outreach clinics, so I was very concerned how this might affect the healing of Casper’s now closed palate.  Throughout the week, Casper was on intravenous antiviral and antibiotic medications.  His symptoms improved and slowly he got back to his usual happy self.  Prior to Casper’s discharge, our Cleft Nurse visited the hospital and confirmed that subsequently Casper’s soft palate had reopened and so had closed shorter than expected and that a small hole had developed between the hard and soft palate.  At that moment I felt numb. I felt sad. I felt angry and so disappointed.  What did that mean?  Did that mean Casper would need more palate surgery?  Did that mean Casper’s speech would still not develop?  Again, I was overwhelmed and hit by a pang of too many emotions and my role of mummy being tested.

Over the next few months, we met with Casper’s Cleft Team and the Consultant confirmed the small hole and the shortening of the soft palate.  They explained that it might be possible that further palate surgery will be needed, though not for certain, and if and when it could occur is unknown.

“Actually I felt like I did need to worry. Why didn’t people understand? And yes Casper is so beautiful, but his treatment had drained my energy.”

In the meantime it has been a waiting game and the not knowing suddenly had massive consequences.  For reasons I couldn’t explain I was exhausted. I found everything really difficult and again everything was too much. Little things would provoke emotions, like seeing a new mum feeding her baby, whether it was bottle feeding or breast feeding.  Hearing another toddler talk or see them suck through a straw or a non-spill beaker gave me the same feeling.  Whether it was seeing another person’s scan photo and even hearing people tell us what great job they’d done on his lip surgery and that we ‘don’t need to worry now’ and that he’s beautiful.  Actually I felt like I did need to worry. Why didn’t people understand? And yes Casper is so beautiful, but his treatment had drained my energy.

I ended up taking time off work, however with the help of the Cleft Team Psychologist and some amazing close friends, I started to learn to be OK with the unknown and the unanswered questions.  Over the year, I have been lucky enough to meet adults who have had cleft lip and/or palate closure which was a huge turning point for me.  In particular, I met a beautiful family with a gentleman who had cleft lip and palate closure as a child.  From conversations with them, my uncertainties of Casper having a hole between his soft and hard palate and shortened soft palate were blown out of the water, as this eloquently spoken man, who had these same issues, and as an adult doesn’t find them having major impacts on his life.   Even though things hadn’t been text book and certainly hadn’t felt ideal, I was suddenly reassured. I was so relieved and I was so pleased to hear that man’s story and I am so grateful to him for sharing it with me.

It has been so good to speak with adults born with a cleft, hearing their memories, discussing questions and sharing experiences.  It has helped me to foresee Casper’s future surgery, at some point within his school years, to close the gum notch that he has.

Casper is still having speech and language therapy.  It has been good to have professional insight into how his speech is developing.  His speech is delayed, however he makes his voice heard and we hear him try and make new sounds most days.  He also has had regular audiology appointments, as his left grommet fell out after approximately 7 months and his glue ear has returned to that ear.  Luckily it’s currently not having a negative affect on his hearing, as it did before.  The Cleft Team dentist has also seen us and kept us updated with the general health of his teeth.  He still has some baby teeth missing, and some have come through at varying angles but overall there are no concerns.

We will keep up with these appointments and, unless the speech and language team identify anything that requires extra input by the Cleft Team in the meantime, we will meet with his consultant again when he is about 3 years old. It seems a long way off, although I know will be here before we know it.

Alongside all this, Casper has recently mastered running and jumping. His game of pulling himself up onto furniture continues, however it’s moved on to climbing up on the kitchen counters and his elder brother’s bunk bed too, much to his amusement!  He has the most amazing milk-toothy smile.  It’s very hard to imagine his ‘cleft smile’ these days, however I am proud to show off his baby photos. The amazing results of his lip surgery are hard to fully describe with mere words.  Many different things are always in the forefront of my mind, but through our experience over the past 6 months I am learning to accept that to be unsure or uncertain is OK. Although things have happened differently than expected, they’ll get there in the end.  What matters is that Casper and his brothers are happy. So long as that’s true, any of their plans that haven’t gone as expected don’t matter, there will just be a different plan that we find.

Hello Casper!

Everyone fits a different box, we’re all different and I think that’s how it should be.

Thanks so much to Jemma for getting in touch to share her family’s story. If you’d like to share your story you can share it here through our website.

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