Miracle Marley’s CDH Journey

Marley Jayne was born 36 weeks after her mums water broke, an ultrasound found Marley’s bowels were in her chest compromising her lungs.  There appeared to be no left diaphragm, Marley was going to be 1 in 2,500 born with Congenital Diaphragmatic Hernia, something us as new parents knew very little about which was probably a good thing at the time as the best chance Marley had would be through a natural labour.

Alas, this did not happen and she was born via emergency C-Section with a less than 10% chance of surviving. Once she arrived surgery was imminent to rectify her diaphragm, having surgery only hours old and on the ward.  Once Marley was stable she was flown to Brisbane for surgery on her heart, Congenital Heart Defects are common with CDH.  After spending three months in Brisbane we were able to come home to Townsville where we would spend another few weeks in the Special Care Nursery.

On her 100 day celebration, our fears were realised and she had re-herniated and was rushed back to ICU to prepare for surgery, a procedure which we were told to say our goodbyes as it was risky and the prognosis was dim.  Unfortunately we knew this feeling as this was the third time we were advised to prepare for the devastating.  In true Australian spirit, she pulled through and after a couple of weeks later she was finally discharged.  She still required oxygen at home and was fed through a button surgically implanted in her stomach due to her strong oral aversion, another ailment common with CDH.

Marley had to be taught to eat and swallow orally at 2.5 years, a hard and long process with the only technique left, starve until she ate, a hard thing to watch as a mother. After discharge she endured another open heart surgery, a third diaphragm repair and other day surgery procedures.  During her first winter she spent 10 weeks of the season in hospital due to respiratory illnesses such as, RSV, Bronchitis and Pneumonia.  Marley is about to turn six and last year was our first year with no hospital admissions and she attended prep with only a couple of days absent due to illness and as parents, we could not be more proud.

We are only now seeing the long term physical affects of her long admissions in hospital in her school work now.  She is smart as a tack but has been tested as having motor planning difficulties and this affects her fine and gross motor skills.  She sees an Occupational Therapist on a regular basis and is improving, although, it is worrying with her gross motor development as falls and unbalance are occurring more frequently.

Marley will most likely require more surgery on her diaphragm as there is no cure for CDH. There is always a potential for respiratory failure due to re-herniation.  As she is now her bowels are protruding into her chest but due to the complexity of surgery and the fact she’s run out of areas to access the diaphragm, we are on ‘watch’ and the only time she will have more surgery will be when it’s life saving.