It’s just a cleft….

I’ve been undecided about writing this post for some time as Isla’s journey through palate repair has been different from other babies with a cleft. Isla was also born with Pierre Robin Sequence and a genetic condition. She has a flat facial profile and small jaw. So if you are reading this pre-op or as an expectant baby with a cleft lip/palate, please don’t think this is always how it goes. Isla has additional complications which have meant that closing her palate was always going to be tricky. So here goes…

Isla’s palate repair was scheduled for 8th March 2017 (you can read a little more about the run up to surgery here). We had a long wait but she finally went down to surgery at lunchtime. I was slightly less anxious this time; after all, we’d done it before! But no one tells you that whether it’s the first or the tenth time of leaving your child in that operating theatre, it never gets any easier. Isla was particularly wriggly and we had to leave her whimpering which was the hardest thing I’ve ever had to do.

Both of Isla’s ops have been lengthy, taking around 5-6 hours. Trying to distract yourself is an impossible task – I must have paced the corridors for hours. Walking helped but the sick feeling in my stomach stayed; a feeling all too familiar from her early days and previous surgeries. When the pager went off to say she was out of theatre, we ran up to recovery. We were pleasantly surprised to see her awake, albeit groggy, and sitting on the nurse’s knee. After lip repair, Isla had needed additional oxygen so it was a relief to see she wasn’t on any this time. She snuggled into me and feel back to sleep.

As expected, the first few days were rough for her. Previously a milk monster, she refused her bottle and although this was not surprising initially, this continued. After she had been off IV fluids for 24 hours, she was still not drinking any reasonable quantities and certainly not enough to keep her hydrated so it was decided to use the nasogastric (NG) tube that had been put in place for medication to feed her. We were visited by our lovely cleft nurse on the ward and she had lots of helpful suggestions but Isla was having none of it. As Saturday evening approached, it became apparent there were no beds on any children’s wards in Addenbrookes and the ward we were on closed for the weekend. After much reluctance and discussions with ward staff and Isla’s surgeon, it was decided that as we were trained to use the NG tube and had done so previously, Isla would have to be discharged with the tube in place for feeds.

 

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Back home with her favourite!

 

 

The coming weeks were hard. Isla was desperately trying but it was obvious that she was struggling with the huge changes to her mouth and airway. She began to have choking episodes, particularly at night,  and pauses in her breathing during sleep. We tried absolutely everything to get her to feed and both of us became increasingly frustrated at the situation.

Our cleft nurse was trying to get Isla admitted to Addenbrookes for assessment but there was a huge issue with beds. In the meantime, we were couriered the equipment to do an overnight sleep study at home for 2 nights to see what was happening to her oxygen levels at night time. Finally we had a phone call on 5th April to say that Isla had a bed! She had an additional overnight sleep study with chest and stomach bands to monitor movement, SATs monitor on her foot and a camera videoing her.

We met the respiratory team who assessed and gave us some useful advice. The cleft nurse also came to see us with more suggestions. By far the most useful part of our stay was seeing the dysphasia Speech and Language specialist. Her advice was extremely useful. She felt that Isla had developed an aversion to feeding and alongside the physical changes, she was struggling with not being able to control her feeding.

When we got home, we completely changed tact, following the specialist’s advice. Everything was completely controlled by Isla. She was offered her bottle twice a day and at every mealtime, she was given the same food as us on her highchair tray (a challenge when she was still on a soft food diet!)

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Slowly but surely, her feeds have started to improve and her solids intake is increasing. We had a big glimmer of hope when she had only needed minimal tube top ups for a few day and then pulled her tube out whilst I momentarily had my back turned. We decided to see how she got on without it but her feeding reverted and unfortunately, we had to take her to the hospital to replace the tube.

 

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Not too happy with her new tube!

 

So no, it’s not “just a cleft”. It’s not just two surgeries. Isla has had far from a straightforward time. She’s under multiple specialists including genetics, audiology, paediatrics, dietetics, community nurses, ophthalmology, speech and language therapists, Teacher of the Deaf and is showing some developmental delays (which is unsurprising considering everything she’s been through). We have 2-3 appointments per week. There will be more surgeries; probably multiple but at the very least, 2 more. Her palate is very short so she still has food and milk coming down her nose and can only make very limited speech sounds. She will probably need extensive dental work – her first tooth was removed from her nose during her lip closure surgery.  The sleep study showed obstructions in her sleep where her oxygen levels frequently dip, so she will need further investigation. Her hearing will be monitored and supported by aids, and she already sees a speech therapist.

 

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From the Cleftopedia page

 

For Isla, it’s not just a cleft. It’s not “easily fixed”. It’s not “just cosmetic”.  (Yes, we have had all of those things said to us + more…..)
Isla is in the 15% of babies who have additional conditions and will need lifelong follow-up. The cleft care pathway is at least 19 years. We don’t yet know the full implications of her genetic condition. But we will cross that bridge when we come to it. For now, we focus on getting the best care for Isla and making sure she has every opportunity to thrive. She certainly has the determination!

8 thoughts on “It’s just a cleft….

  1. I share in your struggle even tho I am thousands of miles away. My son was also born with PRS and a mild cleft palate. We have endured mutiple surgeries as well. We also have a g-tube as he continued to have trouble swallowing. He is now almost 2 and is eating and drinking by mouth although his tube is still there just in case. I pray you both stay strong and everything goes well!! Good luck to you!!! Just wanted to let u know you’re not alone even tho we live far apart!! Know you have someone in the US cheering for you!!!

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  2. I couldn’t if Said it better. My son has PRS. And was never able to take a bottle. My son has Had 4 JDs instead of one, cleft repair, Mic key, and a Tracheostomy, are among a few surgeries….Our was not a one and done deal so many are blessed with. We had surgery after surgery. I have another baby with a heart defect called Tetralogy of fallot and had open heart surgery, which did not completely fixate defect and her heart went into third degree heart block and required a pacemaker….she did develop an eating aversion and refused to eat…she gagged at everything including her pacifier. It wasn’t until she was nearly 2 before she ate food…..And our speech therapy was awful. It was my husband and I who decided to take matters in our own hands and just like you allowed her to participate on her terms. We always ate at the table and so when we sat down she was given a plate in front of her as the rest of us. Maybe a few weeks later she started licking her food. Using her finger to taste. It took 7 months, but she soon was eating…not every g, but eating. You are so right when you talk about “just a cleft” the after math of some surgeries so many people do not see. It is scary and frustrating, and at times depressing. Thank you.

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  3. We had been told at 17 week scan about our daughters cleft lip and cleft palate to the left side on her 20 weeks been told it’s severe we’re seeing the cleft team to get more info but was told to prepare for lots of surgery.she too has a syndrome just not sure what the extent of it is. Scary times ahead but am hoping all will be ok xx

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  4. My daughter was also born with PRS and this really hit home! She is globally developmentally delayed and has a g-tube, she’s 2 and doesn’t walk yet… So many people have said oh it’s just a surgery or she’s still beautiful… Of course she’s beautiful I never said different and my tears do not come from not finding her perfect because I do, my tears are for the pain she’s been through and the pain she faces in the future! We just did palate repair in April and our max two night stay turned into 15 days in the PICU with 8 being on a ventilator and under sedation….please people stop saying it’s just a cleft or just a surgery.

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