When pregnant my daughter was diagnosed with
congenital diaphramatic hernia (CDH( where a hole in the diaphram allows organs to herniate in to the chest cavity. My daughters liver took up the hole left side of her chest cavity meaning her lungs wouldn't have the room to grow. Due to the severity they gave her a 15 percent chance of surving.
heart coarctation - a narrowing of the aorta preventing blood flow to one side of the heart.
2 holes in her heart.
dextrocardia ( right sided heart )
by the end of the pregnancy they said there was hardly no chance and offered me a termination at 34 weeks.
she was born at 36 weeks. Was on full life support for 12 days when they decided to operate on the cdh and the heart coarctaion. She spent a further 2 weeks on the ventilator and then cpap breathing machine for 6 weeks then ventilator for 1 week then cpap for a further 2 weeks.
the cdh has left her with
hardly any left lung and a small right lung
pulmonary hypertention ( high blood pressure in the heart treated with viagra )
chronic lung disease
severe reflux
and moderate development delay.
whilst in hospital they discovered she had kartengers syndrome -- where the hairs on the lungs don't work so can't clear mucus which builds up and causes infections attacking the lungs ...it is treated the same as cystic fibrosis.
because of the cdh meaning she has undeveloped lungs and the kartngers causes infections in the lungs this is an akward mix as one causes infections and the other means its harder to fight off.
she also has 2 holes still in the heart which one needs to be closed but they cant because of the pulmonary hypertention so using meds to keep both stable.
at nearly 4 months old my daughter come home for the first time. Shes been home since Tuesday ..no one really knows how the kartengers and the effects of cdh will work so for now its day by day.
she is on 24/7 home oxygen and has nebuliasers.
she feeds every hr 20 mls through Ng feeding tube.
she is on 11 diff meds ..4 meds with each feed.
im 22 a single first time mum ...i didn't think parenthood would be like this but my daughter gives me strength and im so proud to call her my daughter , her strength amazes me every day.
but it gets lonely and tiring and sometimes i just need to off load x