Tag Archives: Cleft

The day my perspective changed – Part 2

Second time around, induced labour was no better. Just as painful as the first time and, I’m told, more intense than a natural labour. I’ll spare you the gory details and just say that it was quicker than the first, I used the gas only and the midwives were angels.

After 7 1/2 hours of labour, three pushes and a lot of profanities my angel made his way into the world. After a little whimper and a little bit of stimulation Mr Giggles had arrived. We had waited for this moment for 9 months. We were relieved, we were worn out, we were ecstatic, we were in love.

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Minutes old

I remember now, having the slightest suspicion that something was wrong while we were having “skin to skin” time immediately after he was born. I was attempting to breast feed and he just wouldn’t “latch on”. I ignored my suspicion and just put it down to the fact that we both had to learn how to do it.

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It wasn’t until later that night when his baby check was being performed that the Midwife found it. I had just had my shower and was getting back into bed when she said “He’s got a Cleft Palate. Did you know?”.

My entire world went into a spin. As a nurse, I had the knowledge behind me to understand the potential effects of this condition on my little baby. More importantly, I too had been born with a Cleft Palate. I knew from personal experience what lay ahead of us. For my darling newborn son, for his older brother and for us, his parents.

A Cleft Palate occurs at around 6-8 weeks of pregnancy when the roof of the babies mouth is starting to fuse together and can involve the gum line or lip. It can also encompass all three; Lip, Gum and Palate. There are different reasons why Cleft lips and Palates form but unfortunately we haven’t been able to find the reason why Mr Giggles developed one. Despite the fact that not a lot is known about why, it’s one of the most common birth defects around with 1 in 700 babies born with some form of cleft.

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Image Source

As I began to process this new information, I was reliving my childhood. Days spent at the kids hospital attending Cleft Clinic appointments, yearly photos to track my progress, speech pathology appointments, multiple sets of Grommets and 11 years of Orthodontic work. Not to mention the surgeries to repair the defect. Was this what was ahead of us?

In that instant, as the realisation began to set in, I was devastated. I was angry. I was grieving. I grieved for the loss of my “perfect baby”. I was devastated as I began to realise that I was not going to be able to breast feed my baby. I had put in so much preparation to make it work this time around and I was angry. I wanted to know why it had to be him, why it had to be us.

But I had to be strong. There was a 2 year old toddler at home that was depending on me to make him feel good about his little brother. I had a husband who was looking at me to take the lead on this one and I had to be a Mum to this gorgeous little baby who knew no different than what he was born into. He didn’t know that not being able to suck wasn’t normal. He didn’t know that being syringe fed mummy’s colostrum wasn’t normal. He didn’t know what was ahead of him.

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All the doctors and nurses were amazing. We were referred to the Cleft clinic at Westmead Children’s Hospital. The Cleft Palate Nurse based at the clinic rang us the day after he was born, just to touch base. We would have an appointment when he was 2 weeks old. It seems like we were seen by every person in the hospital. There were visits by the Neonatologist, the Speech Therapist, his Plastic Surgeon, a Lactation Specialist… Our heads were spinning. Not only did we have to learn how to use the special bottles but there was all the follow up appointments we had to keep track of.

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We were discharged home after 4 days with a handful of appointments, referrals and feeding equipment. Those first few weeks were tiring, to say the least. Mr Giggles was so slow to feed and putting on weight, we were taking about an hour to get 60 mL into him and he was burning up the calories before he could even absorb them.

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Our first clinic appointment was full on. There were different people to go and see and lots of waiting around. We met with his plastic surgeon, the same surgeon who had repaired my Cleft Palate 28 years prior, who advised us that unlike other Cleft Palate babies, Mr Giggles would have to wait until he was 15 months old before he could have his palate repaired. They are generally repaired around 9-10 months. But because his Cleft was so extensive we would have to wait until he was a little bit bigger. The Cleft Nurse is a wealth of knowledge and provides us with a lot of support and refers us to a support service.

Mr Giggles’ first 6 weeks of life seemed to be filled with screaming and micro-naps. All he seemed to do was cry, I couldn’t put him down. He lived in the papoose, every time I laid him down he would just cry. As I hadn’t been able to produce much milk, we had moved to formula very early on and it seemed we swapped formulas every couple of days. Until finally, we found one that worked. The effect was almost instantaneous. He was finally sleeping! Sure he was a “windy” baby but my eldest had also suffered with wind, so we knew how to cope.

Eight months on and we are going well. Mr Giggles is meeting all his milestones and some, earlier than his brother did. All those feeding issues we had in the early days seem to have disappeared and he is now thriving. He was seen by an Opthamologist, Audiologist, Cardiologist and ENT specialist in the early days and given the all clear so far. He might need surgery to insert a set of Grommets later but we will cross that bridge when we come to it. So far we’ve only had 2 ear infections and hopefully there won’t be any more.

It would have been very easy for me to wallow in self pity, but with all that has been thrown at us, it’s only made us stronger. Yes, Mr Giggles has a Cleft Palate but YES it can be fixed. There are so many other families out there that aren’t as lucky as us. We already had 1 gorgeous boy at home waiting for us, we were so lucky that Mr Giggles’ condition wasn’t any worse.

And that’s when my perspective changed.

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