Ben Maly

Tetralogy of Fallot

We were told at our 20 week scan that something wasn't quite right with our baby's heart.  Almost a week later (that week felt like a decade), it was confirmed by Dr Gladman that our son had Tetralogy of Fallot

Born 4 days late via emergency c-section, weighing a whopping 10lb 11oz, Benjamin was born.  We were told that they didn't think he would have any problems and surgery would be elective at around 6-9 months of age.  Ben started having blue spells at 3 weeks old. After numerous hospital admissions, Ben was transferred to Alder Hey on the 4th December 2013, aged 7 weeks.

They decided because of Ben's size and the anatomy of his heart, they would do a full Fallots repair.  Ben underwent 5 hours of open heart surgery was taken onto Intensive Care Unit.  His first night was comfortable and we thought he was through the worst.

Unfortunately, Ben went into cardiac arrest the following morning.  After 15 minutes of CPR and being unable to revive him, they decided to put him onto ECMO. Ben remained relatively stable and ECMO and apparently you could see his heart trying to pump and this made the doctors believe he could be trialed off ECMO the next day.

Thankfully they managed to get him off ECMO and he made a slow recovery after encountering various complications along the way e.g. Chylothorax - he had his chest drains in from 10.12.13 to 01.01.14. The drain sites became infected.  Eventually he was discharged home on the 7th January 2014......for one night!

We took him to our local hospital because of reduced feeds and increased work of breathing.  Ben then had an hypothermic episode and was admitted into High Dependancy Unit with Bronchiolitis.  He was discharged 5 days later.  He was again home for one night before being admitted again.  The re-admissions continued until they decided there was a reason for his constant need for oxygen.  Ben was sent to alder hey for a cardiac catheter iPad the end if January which showed that he had a large 7-8mm VSD which would need another OHS.  It was decided this would take place at the end mid march.  

After numerous trips to our local hospital, with increased work of breathing and inability to feed we were told that Ben was in heart failure and would need to be transferred to Alder Hey as an urgent in patient to have the VSD repaired.

Ben had this op 26.02.14 and unlike last time he made a swift and smooth recovery and was home less than a week later.  Thankfully he had had no heart related issues since and is now a healthy,thriving little boy who is full of life and brings us joy even on his grumpiest days.



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