River

I have wanted to write about Rivers birth and finding out he would be born with a cleft lip and palate for a long time. When we were told at our 20 week scan that our second baby would be cleft affected we were in shock, there were also a lot of google searches that resulted in crying myself to sleep most nights. I want to share our story so that other families going through this can see that life has a funny way of working out and these beautiful babies will give you so much joy. Although the journey can be tough, it really highlights how strong and brave these children and their mothers are.

138D0334-C701-46A7-A772-C96F744DDEC1.JPG

I was working from home the night we received the phone call. My OBGYN called at around 7pm to tell me he was sorry, but the scans I had that day showed that our baby most likely had a cleft lip. I answered very casually that it was fine and I would book in to see him in a few days - obviously in shock.

The following months were full of some very expensive scans, endless specialist appointments and a lot of depressing conversations. Doctors brought up termination and the whole thing became extremely overwhelming, we were told that there was a risk of River having syndromes or anomalies associated with his cleft. We were given the option to have an amniocentesis but also informed of the risks involved and the chance of miscarriage, we decided against having the amnio after a lot of emotional conversations. River was also the last pregnancy I would be able to have, after going through two Hypermesis Gravidarum pregnancies we had made the decision that neither of us could go through another.

I had wanted a VBAC for my second birth but after meeting with my OBGYN, he persuaded me to book in for a c- section. At the time I felt a massive sense of loss, my entire pregnancy was traumatic, the birth wasn’t going to be how I had wanted and to top it all off I was informed that River would not be able to breastfeed - something that I really enjoyed with my firstborn. It was around this time that we met with Rivers surgeon, Dr Stuart Bade. For the first time I was made to feel that everything would be okay, he was confident that he would be able to fix Rivers cleft and that I had nothing to worry about. I will be forever grateful that we met with him before birth, as he put us completely at ease.

The c-section went well, the hospital in my opinion were overly cautious and I was only able to hold River for a few minutes before they took him away to the special care nursery. I was left alone to get stitched back up and spend a few hours in recovery, afterwards they wheeled me to my room. I expected I would be able to hold River or at least have him brought to the room but I was unable to walk after the surgery and they wouldn’t bring him to me. At the time I didn’t understand why they couldn’t bring him in and the following 8 days in hospital were extremely stressful as I was pumping every two hours and he was separated from me the entire time. Thinking about it now makes me emotional, and if I could change anything about this experience I would have had him in a larger hospital that would have been more experienced with children born with clefts.

After arriving home we had appointments straight away with his orthodontic team, he was fitted with a “NAM plate” which was to be a permanent fixture until his first surgery at 4 months old. The plate had to be washed after each feed and all of the taping holding it to his face needed to be changed around 3 times a day. On top of all of the taping and learning how to feed him with his special bottles I was pushing myself to express breast milk for him.

If I could go back in time I would have been a lot kinder to myself. We had to move into my parents home where River and I had our own bedroom, our days consisted of napping, pumping, feeding, sterilising everything, taping, rocking him back to sleep so that I had enough time to pump again before the next feed was due. This went on for 9 months, night and day all while I still had a toddler to look after. HOT TIP - I don’t recommend pushing yourself to the point of mental insanity because some nurse told you “breast is best.”

I was told that because River would be having surgeries on his mouth that breast milk would help with the healing process, his second surgery was at 8 months old so I was committed to pumping until he was healed from the second surgery. He would have been completely fine with formula, and I would have been a much less traumatised human at the end of the whole process had I not felt pressured into pumping. If you’re going through something similar please remember, other people have not been where you have and they do not get to make you feel guilty about the choices you make regarding your child.

The first surgery was a big one, 5 hours in total. When he came out of surgery I burst into tears, as strange as it sounds I missed his big cleft smile. I had fallen in love with him just as he was and even though I knew he would look different after the surgery it was a big shock to the system. We spent a week at the Mater hospital managing his pain and recovering, we also had to re-learn how to feed him as the post surgery teat was made of hard plastic and you have to be careful to not touch the stitches.

Life went on as normal - pumping and all, until his second surgery at 8 months old. This was to rebuild his palate, which is still hard for me to wrap my head around. I cannot praise Dr Bade enough, the results from these operations still blow my mind when I look back at photos. Recovery was very similar to the first, we spent the week in hospital managing pain with heavy medication and also trying to figure out how best to feed him.

D5D5BAD2-9638-424C-BECD-4E13EFD77C82.JPG

After the two surgeries we tried to get back to normal life, but it was hard. After having HG through two pregnancies, both births being c-sections and both babies having issues in their first year we hadn’t connected as a family or a couple for literally years. The whole process of having children was very different to how I imagined it to be and I was suffering from post natal depression. The entire experience felt like we were just surviving each day and not enjoying or even living life, I would recommend anyone struggling to seek help from a professional. I started talking to a therapist and made sure I vented to my girlfriends and let everyone around me know how I was feeling.

After a bit of work I started to feel better and I came to appreciate the experiences we had been through instead of feeling bitter about it. River is a beautiful, kind, gentle and funny little boy and I absolutely love the one on one time we get to spend together whenever he has a specialist appointment. We will usually make a day of it and invite my mum along and go out to lunch together, anything to make these appointments fun and something special for him.

Looking back now I can’t believe I was ever worried about him or how we would handle all of the surgeries and appointments. River takes everything in his stride and we are so lucky to live where we do, the cleft team at Lady Cilento are amazing and I look forward to the journey ahead and how it will shape him. If you have any questions please let me know, I would love to hear from any parents going through the same x

LifestyleMia Kelly1 Comment