Madeline’s Story
Madeline was born on the 16.6.00 and 24 hours after she was born she wasn’t feeding and was very tired. We eventually were transferred to the John Hunter Hospital as Madeline was born in a Private Hospital. It was there that after x-rays were done they noticed her heart wasn’t the normal shape. After discussions with specialists we were heading down to Westmead.
Once we arrived at Westmead it was then told to us that Madeline would have to have a caterisation to determine the exact problem. Once the procedure was done we were aware she had pulmonary atresia with a vsd. We were also at this point told to have genetic testing for VCFS (Velo Cardio Facial Syndrome), which is a deletion of 22 chromosomes. It was hard enough knowing that Madeline had a heart condition but to think that genetically there was something wrong was very hard to hear.
As we headed up to see her the next morning after her Cardiac Cath we noticed that she wasn’t in the same spot in extended care that she was when we left her. We were then told that she was in intensive care, as we walked down they were frantically working on her as she had dropped her saturations to below 30% and had starved the biggest organ (bowel) of oxygen. So they kept her sedated for quite a while as the swelling needed to go down. At this point it was life or death and we had know idea how we were going to cope. She was an absolute fighter but it took 4 weeks for the bowel to rest and was noticed that she had a blockage, which need to be repaired in surgery. The bowel was repaired but she had to have an ileostomy bag for about 6 months, as there was a perforation in her bowel. So once her repair was completed she could then have the first stage of her heart operation, which was a central shunt. Which was done by the doctor we call God (Dr Nunn) we owe him so much.
The next few years she had to undergo some unifocalisations to the right and left lungs which was preparing her for her final operation.
The final operation was scheduled for 1ST April 2004 we should have guessed it was an omen. Madeline had a longer than expected surgery due to bleeding and getting the pressures right in both chambers seeing her heart hadn’t been use to working the right way. So after a stressful 8 hours we were able to go in to see her and our first reaction was how beautiful and pink she was. They were short lived because as a matter of 24 hours she was in kidney failure and her liver wasn’t doing real well either. You see how strong these children are and it is so surprising how much inner strength they have. It took 7 days to get out of intensive care but she came back stronger than ever.
Since then we have had a sub mucus cleft palate repair and her talking is remarkably better than before.
The middle of last year we applied to the Make a Wish Foundation for a special wish for Madeline, as we felt she was very deserving of it.
Madeline got the wish of a swimming pool and a chicken coop, which we have had so much enjoyment from. Madeline has had a stroke very early on in her life so she doesn’t have much use of her right arm so the pool is great therapy and definitely great fun.
Madeline has just started Kindergarten this year and we can’t believe how well she is going. After I was so stressed about the transition.
We love her strength and determination to succeed in everything she does and especially we love her heart, and wouldn’t know where our life would be with out her.
Kylie and Troy
