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Catherine's Story

“No, you can’t try to get pregnant, it’s not safe”.

Not the words I expected to hear, definitely not the words I wanted to hear.

Our pregnancy story began long before we saw those two little lines on the pee stick. After a routine check-up at my GP to make sure everything was good to start a family, I found out I had Graves disease. This meant the start of six months of medication, a review and another six month period that was not safe to get pregnant, for me or any potential baby. At the time this process felt like an eternity, in reality and upon reflection it was just a small speed bump along the way.

After the all clear to start a family we were lucky enough to get pregnant within a year of trying. We were beyond excited and couldn’t believe we were about to become a family of 3. After the scare of some early bleeding the first 3 months of my pregnancy went very smoothly. I had minimal morning sickness and was thrilled to embrace my growing bump, even as early as 10 weeks! Routine ultrasounds went well and we went about telling all of our family and friends. It was an amazing rush to share such beautiful news. The weeks went by and I was enjoying being pregnant, I continued to love the growing bump and loved showing it off.

Then we came to our 20 week scan. My husband got the time off work to come and see our little human on the screen. Heartbeat – check. Brain size and formation – check. Spine – check. Internal organs – check. The scan went on. Face. Eyes. Lips. Nose. Arms. Fingers. Legs. Feet. Lips. Nose. Lips. Nose. I watched the technician as she went back and forth from my babies limbs to its face. Lips, nose, lips, nose. I asked if there was something wrong. She just looked at me. “Just give me a minute” she said. We had no idea what was going on. Eventually she came back and had one more look. Then silence. “It looks like your baby has a cleft lip and cleft palate”. What? The confusion started, what does this mean, are you sure, how extensive is it, are you sure? Then the tears came. As we went back to reception with the tears flowing and feeling numb, I wanted to hide from the other pregnant women in the waiting room. I didn’t want them to be scared of going into that room. I just wanted to get out of there.

Even though my profession is working with children with physical disabilities and health impairments, and I know how common this is, I never thought it would be me. The next few hours were a spin. How do we tell people? Everyone was excited to hear how the ultrasound went, but I didn’t have the response that they were expecting. We went about telling our immediate family. Not quite the rush of telling them that we were pregnant. The unknown is a scary thing, unexpected news is difficult for everyone.

The weeks went on and we became more informed. We learnt the questions to ask and what to tell people. We got very good at how we delivered the information and became more prepared for the various reactions. During this time I also found out that because my blood type is negative I needed anti-D injections throughout my pregnancy, just to add to the fun! We were also linked up with the Royal Children’s Hospital and had out first appointment with the plastic and maxillofacial surgeon when I was 30 weeks. We invested in the special needs feeding bottle that our baby would need to use as he/she wouldn’t have the ability to suck without a palate. Just a cheap $85 investment for one bottle! We familiarised ourselves with it, we wanted to be as prepared as we could.

I was induced by my obstetrician on my due date and was excited to meet our little person. I went into labour very open minded, I didn’t have any set plans about drugs, delivery methods or specific birth plans. At the end of the day we just wanted our baby, and me, to be safe. My labour was uneventful for the first 24 hours. The gel didn’t work so I was hooked up to the drip. This made for a fun time. My heart wasn’t very happy with the oxytocin so I ended up having an ECG during my early labour. Time went on and the contractions were all over the place and they realised my baby was posterior. At one stage I remember asking my husband in a very loud voice if he could get the gas, the midwives soon came in and set it up for me. Not too long after I started the gas I met the second love of my life (at the time) the anaesthetist! I professed my love to him shortly after the epidural set in! More time went by and bub started to get distressed. With our priority of everyones safety they prepared to take me to the operating room. The plan was to try and deliver with forceps, and if that didn’t work to go straight for a ceasarian. As it played out the forceps worked and we welcomed our little man into the world. The anxiety of seeing him for the first time melted away the instant we saw him. He was devine. He was perfect. He was ours.

Learning to feed was an interesting experience. I expressed as often as I could and initially used syringes to give bub the colostrum. We then moved on to fully expressing and feeding with the worlds most expensive bottle. But it worked. Feeds would take a full hour, which left our baby exhausted. We soon worked out that we would have to mix feed as my milk still hadn’t come in, again something that I was very open to, as long as my baby was fed I didn’t mind if it was breast milk or formula.

While we were still in hospital we realised that reactions to our perfect little man were going to be mixed. After one midwife told me we would need to cover his face in public so people wouldn’t stare, we also realised that we needed to be our little boys strongest advocates. We would not be covering his face. We would not be staying at home. We were not going to shy away. He, and we, had every right to do as every other new family did. I often reflect on that conversation and am so thankful that I was very informed about my bubs cleft and that I am stronger than I realised. If that midwife had said that to a more vulnerable mum, I hate to think of the effect it could have had on her. I am also VERY thankful that my baby blues hadn’t set in yet, I'm sure that comment would have crushed me if they had. Especially because my “5 day blues” came on day 2-3 and they hit me much harder than I was prepared for!

Our little man didn’t pass his first hearing test - I will never say he failed it!). He would eventually be diagnosed as having a moderate hearing loss, something that is not uncommon with kids with clefts. He was fitted with bone conductor hearing aides, just another thing he took in his stride. We headed into the Royal Children’s Hospital for his first appointment when he was just 7 days old. He saw the plastic and maxillofacial surgeon and Orthodontist. He was measured for a naso-alveolar-moulding (NAM) which was designed to bring his cleft together to make his first surgery easier. It looked much like a mouthguard with a button sticking out the front. And so began our daily routine of fixing the NAM in place inside his mouth with denture adhesive and taping the NAM to our newborn babies face. This included two types of tape and elastic bands. Looking back I am thankful that he was our first baby as we didn’t know any different and could just get on with doing what we needed to do. We made weekly (sometimes twice a week) trips into the Children’s to get the NAM reviewed and adjusted. This continued until our little man had his first surgery at 5.5 months.

In the meantime our baby was just like any other. He hit his milestones, and with some informed choices and a bit of luck he started sleeping through at 6 weeks. At this time, with all of the hospital visits I decided to stop expressing and formula fed full time. A decision I haven’t regretted for a second! Time went on and after this first surgery to close his cleft lip we had to get used to a whole new baby. He was just as happy, just as gorgeous and still our little man.

We always knew that hospital visits, therapy appointments and surgeries were going to be regular occurances in our lives, so when we started to talk about having a second baby we were forever trying to work out the “right time”. It didn’t take us long to realise that there was never going to be a perfect time. So we thought let’s try and add to this awesome little family, and that we did! Our second bundle of joy came into the world after a rather anxious pregnancy. We could only assume that our second baby would also have a cleft as it was all we knew. When all ultrasounds came back clear we were not convinced. But when she arrived (in the same fashion as her big brother – forceps!) we had to believe it. No cleft. A beautiful healthy baby girl, another fact that took me a while to believe. Our beautiful babies were born 15 and a half months apart. With a young toddler at home and a new born baby I had already decided that if I couldn’t breastfeed I wouldn’t be expressing and would go straight to formula. Well this was much easier said than done. Mummy guilt mixed with the good old baby blues saw me in tears before every feed while I was still in the hospital. The anticipation of the pain of breast feeding, mixed with the guilt of considering formula left me a mess. Luckily for me I have a very supportive husband that just wanted the best for all of us. So I prepared myself to tell the midwife on duty that I had decided to formula feed. I was teary and anxious and ready with all of my reasoning. But when I told her I was met with a warm smile, “no worries, I will go and get some bottles”. She obviously saw the shock and relief on my face and reassured me that it doesn’t matter HOW you feed your baby, as long as you FEED your baby. Something that I will always be thankful for and one of the only things that I feel the need to tell pregnant friends or new mums.

We have been lucky that both of our kids have reached their physical milestones in good times. Hearing and speech was always a different story. Both kids have had grommets, which improved their hearing to appropriate levels for speech development. We did our homework and both kids were sleeping through from 6 weeks. We definitely have not been strangers of the local hospitals. Number 1 has now had 3 surgeries and has one more planned for this year (and many more until he is at least 21). He has had glue to patch up 2 different cuts and I’m sure there will be more in the future. Number 2 has done her best to keep up too, she has dislocated her elbow, had grommets, choked (requiring back blows) on a toy and required exploratory surgery to find what she swallowed! Never a dull moment!

Motherhood for me has been a little bit of everything. It is joy, stress, fun, exhaustion, laughter and elation. I have enjoyed our kids being so close in age and it has worked beautifully for us. They are now friends as well as siblings. They are both thriving in kindergarten and have a love for learning that I am very proud of. I have learned in myself patience and strength that I didn’t realise were possible. I have also learnt that some days patience is non-existent! At the end of the day I hope that my superpower is raising good kids. I already know they are brave, resilient and happy. I hope that this continues and that they are always kind souls who do their best in this world.

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