Cystic Fibrosis is an incurable genetic disease. There is no known history of it on mine or my husband’s side of the families but my husband and I are both carriers (we did not know this prior). This may be because most babies with CF used to die before their first birthday. With modern medicine damage to the lungs is reduced so that the deterioration happens later and at a slower rate, extending life expectancy.
At 3 weeks old Genevieve and Penelope started up on prophylactic antibiotics (which they will remain on for 2 years). Along with CF and food allergies the girls were also diagnosed with innocent heart murmurs. We had a visit to the WCH via med-star ambulance for cardiac ultrasounds, where nothing serious was found.
After what felt like 4 long weeks and so many ups and downs, the girls feeding tubes were removed and they were discharged from hospital. We were finally bringing our babies home and becoming a real family of 5. We had 2 weeks to settle them in at home before their first CF clinic and for more tests to be done. Apart from struggling with reflux and screaming through feeds, they were such good babies.
At their first CF clinic Genny and Penny had more blood test, faecal tests and had sodium added to their diet/bottles. People with CF lose a lot of sodium and chloride through their sweat and therefore it needs to be replaced in their diet. At their second clinic 2 weeks later we met with the paediatric physio and where shown how to do the girls physio, this consists of 20 minutes of lung clearing exercise/ chest tapping for both for each girl every day. They will need to do physio/ exercises every day for life to help break up the thick mucus that develops in their lungs
These CF warriors have a strong family. My husband and I are fighters and survivors and hope to pass these attributes on to all of our girls.
The only thing more terrifying then finding out you’re pregnant with twins is that they have an in-curable illness. This blog is to share our Cystic Fibrosis journey, to help continue spread awareness about CF and the reason why I started ‘It’s a Twin Thing’.Lorraine X