Our surgical journey is over

This time last year we were caught up in the excitement of pregnancy. We knew tomorrow, 4th September 2017, was extra exciting because we would see our little baby again at the 20 week scan. It coincided with my brother’s birthday so it was perfect – we thought.

Clara at our 20 week scan:

Also, little Clara now showing about the same time as the scan:

Precisely a year ago tomorrow, we found out Clara’s stomach was on the wrong side.

The sonographer had been quiet, scanning, scanning some more. She told us at the end she was referring us “upstairs” and they’d be in touch in a week or so to book another date in for us to meet a consultant to find out more. Well “they” called a couple hours later and asked us to go back in 48 hours later. My heart sank – the NHS only works that fast when something is drastically wrong. I was devastated. Distraught. Nothing had prepared us for that. We didn’t know what to expect. Eventually they told us it could be something, it’s probably nothing. Just watch our for bilious vomiting one consultant said. Yellow or green vomit, he said, blue lights to A&E for surgical intervention. But that’s very rare, they said. It was probably nothing to worry about, they said. It’ll likely never cause a problem, another medical professional said, after admitting she wasn’t sure why we were even there, under consultant led care.

Well since Clara joined our world: 80% of her small intestine has gone, the valve between her small and large intestine also gone, her state of hearing couldn’t be confirmed but tests showed profound hearing loss, heterotaxy confirmed with monitoring of the heart, treated asplenic and unable to fight infection, damage seen in the brain, intravenous feeding predicted 3-5 years, minimal one year stay in hospital predicted too. Possible further surgical interventions to lengthen the surface area of the bowel were to be considered at a later date and the methods were discussed in January, but a bowel and liver transplant was to be avoided as a last case resort as they simply don’t work.

Fast forward to today. 364 days since knowing our girl was a little jumbled up. Worrying it was something, hoping it was nothing. Eight surgical procedures later, here we are. Big change.

Today, Clara has been discharged from the surgical team.

For good.

No check ups. No appointments. No more surgery.

Our surgical journey is over.

When I look back – what a time it’s been. Multiple stomas, jejunostemy pipes and bags, lines in and lines out, a failed reconnection attempt resulting in a partially collapsed bowel, sepsis. There’s too much to think about. Today, you’d never know we had lived any of it unless you could see inside my mind or you looked at the photo below.

Additionally, multiple spleens have been found. Clara’s heterotaxy meant rather than be on the left where a single spleen should be, Clara grew multiple smaller spleens on her right hand side. It’s thanks to her surgeons we even know these are here – they physically saw them during an operation a few months back, but it’s taken very recent blood tests to prove they work.

This means no more penicillin twice a day. No freaking out about minimal germs. No extra immunisations required. Future childcare can be “normal” options.

(Clara’s spleen is a prime example of why parent led care is of utmost importance to a baby. Clara’s surgeon, Mr Lee, mentioned he saw spleen tissue during a procedure months ago. He showed me a photograph of it. In hospital I repeatedly asked what could be done to investigate this further. The Infectious Diseases team [or the prevention of, in Clara’s case] said we needed to wait until we were discharged and they’d see us in outpatients clinic. Why I’ll never know. When we did see them, they said we would continue treating Clara as having no functioning spleen. I questioned this, informing them she did have a spleen and there was photographic evidence somewhere. This seemed to be unknown to them and the appointment was cut short. They requested a blood test (despite Clara having bloods taken weekly as an inpatient), an ultrasound, and went off in search of Clara’s files. I’ve then actively chased these results, confident they’d prove my theory correct. Low and behold, Clara has functioning spleen. Eight months worth of penicillin later the decision is made to stop it. If I hadn’t been there when Mr Lee told me about that particular operation, I would never have known about the spleen. And neither would the Infectious Diseases team. And Clara’s body would be becoming more and more tolerant to a drug she didn’t need. YOU are your child’s biggest advocate – NEVER feel you cannot stand up for what you believe to be true).

Clara’s hearing has… changed. More information coming on this as soon as I get the report so I can double check everything I now believe to be true before I share it. It’s astonishing. Developmentally, she’s doing incredibly well and is where she should be, even a month ahead in some things.

Within a year, Clara has defied the odds yet again.

Am I surprised? I shouldn’t be. It’s Clara way. She’s in charge.

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