Adrienne D’Monte
Adrienne D’Monte
Parents Name:Bazil and Alice D’Monte
Childs Age: Born April 1997
Childs Condition: Pulmonary Atresia, VSD, ASD and MAPCAS
Story:
After 5 traumatic miscarriages, we were blessed with a precious little daughter. Right from day one she wasn’t doing well, got tired easily, was restless day and night, had severe feeding problems, with the result she wasn’t thriving. She was born with a cyst in her lower back. So when she was 4 months old she had to go for a MRI Scan under anaesthesia. When she came out she was blue and gasping breath. She was rushed in the ambulance to PMH.
Thanks to Dr Kuria who picked up the irregularity in her heartbeat and asked for an echo, chest X-ray and referred her to the cardiologist. Dr Ramsay met us the next evening and dropped this “bomb” on us that she had major heart conditions – Pulmonary Atresia, VSD, ASD and MAPCAS.
She was put on a nasogastric tube feeding straight away. Two and a half weeks with proper nourishment, she was more energetic, smiling, sitting up, and crawling around just like a ‘normal’ baby of her age. But her oxygen levels continued to stay low. At 6 months she had her first surgery to remove the cyst and urachal remnant. Her heart surgery was kept on hold, until she got in better health and reached a certain weight limit.
At seventeen months in September 1998, she had her first open-heart surgery in Melbourne, which took 12 hours. Were due back in Perth in 10 days. Instead our little girl was in ICU for the next two months, barely surviving on life support. We didn’t know whether she would make it from one day to the next. She picked up an infection, which caused a lot of complications to her already weak heart and lung. In just 18 days she had 3 open-heart surgeries, 3 cardiac arrests, and multiple pneumothoraxes. We felt helpless watching her lying there with 7-8 tubes coming out of her chest draining air and fluid. My eyes were constantly on the monitor hoping for a change in her stats.
By the 6th week, gave up hope of her ever coming off the ventilator. We questioned God as to why he should let this happen. But at the same time Bazil (my husband) and I felt very positive around her. We sensed this inner voice telling us she will be okay and that gave us strength to hang on. We never gave up, never gave up praying. Finally the doctors decided to do a tracheostomy and send her back to Perth. But we requested them to wait just a couple of days, as we felt confident that she would come through. And right enough, within 3 days she began to improve. She fought all the odds against her and turned the corner, much to everyone’s surprise. She was off life support and started breathing normally with a little bit of oxygen. God’s spirit was breathing life and energy into her, healing miraculously.
After two and a half months we returned home from the hospital with a child blind and hemiplegic. She had no control over her body and head. The cardiac arrests caused loss of vision and hemiplegia. It was heartbreaking watching her sitting all strapped up in a chair, rubbing her eyes trying to see what she could around her. We were back and forth from PMH for the next two months again, as she started vomiting continuously. She used to vomit 3-4 times day and night. At this time she was still being tube fed. Then she started getting better. Her eyesight returned in 4 months, not completely but she could manage. She slowly began to go through the normal milestones all over again. In 10 months she started walking. She kept improving every day.
In a few months, we noticed her getting tired and short of breath again. In June 2000, she had her 4th open-heart surgery in Melbourne. Her cardiologist and surgeon were concerned about how she would cope, considering the previous experience. They were only prepared to do a patchwork on her heart. But as always we felt very positive. Bazil was confident, even before we left for Melbourne that she would be back home straight away this time. Dr Cochrane explained to us the options and the risks involved in surgery. Bazil told him up front “Dr Cochrane please go into theatre prepared to do the complete repair today, she will be fine.” O I must admit to be a doubting Thomas sometimes.
We handed her over to the anaesthetist and asked God to watch over her. After ten and a half anxious hours, Dr Cochrane’s call brought music to my ears. I screamed and wept with joy. He had done the complete repair. We could hardly believe our eyes when we saw her in ICU, looking so pink for the first time, due to better oxygen levels. We were back in Perth in 11 days. She has been improving ever since. It is as though she received a new lease in her life with this surgery.
Today she has a problem with the right visual field and depth perception. She can read and write well at school. She started walking slowly after a year. The speech and language took longer. In fact she was saying only single words in Kindergarten. But she is a chatterbox now. She has a leaky pulmonary valve, which affects her energy levels lately. We hope and pray that it does not cause any major problems.
It has been an ongoing struggle with tube feeding, Physio, O.T and Speech therapy sessions’ etc. we are grateful for the care and support we have received from the hospital staff both at P.M.H and Melbourne. The Physio, OT and the Speech Therapy team at Mandurah Community Centre is instrumental in Adrienne’s development in those areas.
The cardiac arrests, and the subsequent stroke she suffered has caused developmental delay, weakened her right side, which affects her mobility, fine and gross motor skills, co-ordination, speech and language development.
She will be 7 years old in April, is in Year 2 now, is very bright and enjoys school very much. She is warm, very friendly and affectionate, hence very popular.
We don’t know what the future holds for her but God has proven His love, support and providence so far. We believe in ADRIENNE (means brave). But for now we thank God for a determined, strong willed little girl. She is a true miracle! With God on our side, we have no fears. She brings so much into our lives.
Alice D’Monte