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I was having a conversation about ‘quality of life’ when his little life hadn’t even kicked off

After her 18 week scan, Claire knew something wasn’t quite right, but it wasn’t until 32 weeks that the reality of the situation became clear.

This is Claire’s story:

I remember going to my 18 week scan feeling excited and holding onto that feeling until my husband and I saw our GP where he asked how I felt about the scan. I instantly knew he was about to deliver news we probably didn’t want to hear. Our GP let us know they found abnormalities with the baby’s nose and torso. What we also weren’t aware of until our scan at 22 weeks, was they also queried issues with the back of the brain. We had a lovely professor who normalised the size of the nose and torso with the size and weight of the fetus. We were told I was having a small baby and that was ok – I would just be closely monitored. 

Tests and monitoring

The next step was an MRI at 28 weeks to check the brain. However, the professor said he wasn’t concerned, which was reassuring. At the MRI, the baby was too active for the radiographer to produce a comprehensive report, so I had a follow up scan booked in the coming weeks. 

I’d had some bleeding throughout my pregnancy, which wasn’t of concern, but required a check-up at the obstetrics clinic each time. So, when I started bleeding at 32 weeks, I went in for review believing I would be home by 10pm that night as usual. What happened next was a bit of a whirlwind. 

The reality of our situation

They noted Killian had reduced movement and decided to keep me in overnight and have a full review the following day with fetal medicine. I was admitted to the ward and the scan revealed our baby was tiny in size at 1200g. 
When I spoke to the obstetrician, the plan was likely for me to continue to be monitored and keep Killian in as long as possible. After the results from the scan, however, the medical team decided leaving Killian was too risky and he needed to enter the world. 

I remember being told “so you’re having a baby” and my response being, “well yes”, not clueing in that she meant I would be giving birth now. My only thought was my unfinished work and the fact I had not packed a hospital bag.
I decided I would discharge for the night to prepare and return the following day. 

I had what felt like a football team of people come and see me. One being the neonatologist who was kind but upfront and prepared me for what would happen if Killian was 1200g or below and how the birth could be traumatising for him and what that would mean. I suddenly found myself having a conversation about ‘quality of life’ when his little life hadn’t even kicked off. 

Welcoming our baby boy

Killian was born 28 May 2021 1347g. I have never been so thankful for extra weight than I was then. Killian has Emanuel syndrome which has contributed to undescended testes, profound hearing loss, low muscle tone, throat dysplasia and he may have more as he develops – it’s a wait and see. We have been to multiple hospitals due to Killian not initially having a bowel movement, CPAP creating bubbles of air in his stomach and Killian having more viruses than the months he’s been alive (he has an older sibling at daycare). Killian is now on oxygen when that was not Initially a problem. 

As a parent I never feel I do enough. I saw this perfect statement once that said, “I’m sick of being called resilient. I want a break from everything thrown at me. I want a break from having to be empathetic all the time. I want a break from battling.” In the instant of reading that, I got it, but then I thought about my gorgeous son and wouldn’t change a thing about him. He’s my little treasure. 

Share your story

Have you found comfort in reading other parents’ stories? We get lots of grateful feedback on how reading these personal stories help new parents to cope with their own experience. Every family has a unique and important story to share. Share your journey and celebrate your story below.

Karen Peters


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