Hannah still required oxygen and was kept in a humidicrib. Originally the pediatrician thought she may have had persistent feotal circulation, however it did not correct itself as expected. Over the next 2 weeks Hannah had an echo which was taped and sent to a pediatric cardiologist in Adelaide, South Australia for review as there is not a pediatric card in Darwin. The pediatricians in Darwin suspected a heart condition but were unable to diagnose exactly what. The ped started Hannah on Lasix for fluid retention when she was a few days old which was very fortunate. Hannah was being fed through a nasogastric tube and was only allowed to be breast fed once every second day.
At 2 weeks Hannah was transferred to a public hospital while waiting for the ped card in Adelaide to respond. After 3 days there, we got a call. We would be flying to Adelaide in 2 hours.
Once in Adelaide, Hannah had more tests: X-rays, blood tests, a barium swallow test to check her esophagus and ultrasounds from head to toe. She also had a catheterisation. Results showed a severe coarctation, almost hypoplastic. She had no pulses in her legs because of it. Also and ASD and VSD. We flew to Melbourne 2 days later on April 1st, and had surgery on April 2nd. It was six and a half hours in theatre then 2 hours stabilizing her in ICU before we could see her.
Hannah had her chest open for 2 days, which meant her first time in ICU was 5 days rather than 2. She went to the ward but was back in ICU less than 12 hours later with a collapsed right lung and fluid around her heart. Back to theatre to drain the fluid and had a drain tube inserted. 5 more days in ICU on the ventilator to reinflate her lung, then back to the ward. On the ward she started feeding slowly and had physio twice a day. We were getting ready to head back to Adelaide in a couple of days when a routine echo showed an 8mm blood clot in her heart. We had to stay with Hannah on Heparin IV until the blood clot started to reduce in size. Adam flew home as planned because we could not change his flight. We thought we would be a few days behind him.
While on heparin treatment, Hannah's lung collapsed again so had to go back to ICU on the ventilator. After a few days the doctor decided it was best to do a diaphragm plication to help the lung expand properly again. The next day Hannah came off the ventilator and started smiling. She was 6 weeks old. Adam came back to Melbourne the next day so we could all be together.
The blood clot started to reduce in size and showed no sign of moving as it was attached to the wall of the ventricle so the heparin was swapped for Aspirin and a few days later we were on our way back to Adelaide. We had to spend a couple of days in Adelaide for doctors to review Hannah as they would be doing follow ups. She had more blood tests for chromosome testing.
The night before we left Adelaide, Hannah needed to go back onto the oxygen so we had to arrange medical assistance: a doctor from Darwin traveled with us home.
Once back in Darwin our pediatrician had us admitted straight into the provate hospital where Hannah was born. We stayed there for a week to try to set up a home supply of oxygen and try to establish feeding. We got home 3 days before Mothers Day. Once home, Hannah still required the nasogastric tube for feeds and developed reflux.
A few weeks after we got home Hannah became very ill suddenly with salmonella. Due to the weather conditions in Darwin, it is easily spread through contact even with a fly. We spent another 3 days in isolation in hospital.
When Hannah was three and a half months old, she no longer needed the oxygen. It was wonderful to walk around, bath her and play with her without tripping over the oxygen tubing.
We moved back to Western Australia when Hannah was 6 months old. There were no specialists in Darwin for Hannah's needs. When 11 months old, Hannah had the surgery for gastrostomy tube. After this her reflux eased and eventually stopped. The g-tube was changed to the button 2 months later.
At 18 months Hannah started walking. At 20 months after intensive feeding therapy she started to eat mushy baby food. Two weeks later she had surgery on her right hand to remove the thumb. The first finger was moved to become the thumb. Hannah coped really well with the plaster cast for 6 weeks but she caught gastro while in the hospital which lasted a week as well. After 6 weeks she had to wear a splint on her hand at night for a 4 months.
Hannah will be 4 soon. She has been having intensive speech therapy as the feeding delays have led to very delayed speech development. She has orthopedic checkups every 4 - 6 months for her spine. It is still the same for now but if her neck begins to tilt more she will need spinal surgery to fuse her neck. Her PEG was removed in June 2001. She is also having physio therapy and occupational therapy to help with developmental delays. She is catching up and started kindergarten this year. Hannah loves kindy. She is also eating properly now and is a very happy little girl.
