Hannah was a very unhappy baby and despite the midwife and GP's trying all sorts we could never quite pin point anything obviously wrong. But she would scream most the night and half the day to. As she became a toddler, she seemed to settle down and we finally started getting to sleep through the night. But now looking back she was never as active as her peers preferring to sit in her pushchair while our friends' kids were running around letting off steam. We still at this point had no clue what was going on.
Then around the age of 3/4 she started to wake in the night drenched in sweat screaming her tummy hurt. Then one day she did this, then passed out on the floor, her eyes were rolling and it really scared used so we went to gp who referred us to a paediatrics. This passing out happened twice more and we noticed her lips were also turning blue quite frequently. The paediatric doctor picked up a 2nd heart sound and we were referred to the heart specialist. They gave us the devastating news that she had pulmonary hypertension, a rare, chronic illness that over time will progress and our world fell apart. We were sent urgently to Great Ormond Street hospital in London where a huge array of tests were done. Treatment began to try and stabilise her heart that was by now enlarged from the extra load trying to pump the blood through the affected arteries between her heart and lungs. None of these medicines especially are approved for pediatric use but so far are helping to keep her realities stable. She has to undergo regular MRI scans, 6 minute walk tests, echocardiograms and monthly blood tests as some of her medications can stop the liver working correctly so close monitoring is essential.
Despite all this she tries to give everything a go, and we try our best to fill life with happy memories.