During Laura’s nine week stay in hospital she had tests on her heart, kidneys and various other checks to see whether her OA/TOF was part of a syndrome like CHARGE or VACTERL.
Although there was nothing obvious to point to a syndrome for Laura, she had OA/TOF and hydrocephalus and was also struggling a bit with an open valve in her heart, so we were referred for genetic counselling.
Looking back now, the days have all blurred together – but some memories stand out. Going home for a night without my new baby was traumatic.
There was a regular round of doctors as we were under the TOF team, the neurosurgeons and the heart doctors.
Eventually the valve in her heart closed, the neurosurgeons decided that she didn’t need a shunt for her hydrocephalus, and her oesophagus started to function.
There were some lovely moments, ones that proved to be milestones during our time there.
When Laura had her second swallow test it was decided to try her on feed by mouth. As I was keen to try and breastfeed her, we decided to try her on cup feeds.
This is tricky, but she was greedy and quick to pick up the skill of drinking from the cup, even if we did spill more than she drank!
Her first actual breast feed was a wonderful moment for me, and I couldn’t believe that it worked so easily at eight weeks old. I think the
fact that the nurses had insisted she had a dummy to keep her suck reflex going really helped.
Going home was both exciting and scary.
We were encouraged to try a trial night at home which, although I hardly slept a wink, was lovely. The next day we were discharged and all at home – but not quite for good.
The TOFS organisation has been a big part of our lives both with the support and friendship they have given us and through our turn being part of the organisation.
Both my husband and I have been part of the Council of Management and we have both enjoyed the opportunity to try and fundraise and to offer support and friendship to other TOF families.
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Gill Jackson, mother of Laura. You can read Gill’s full story in the TOF Book.
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