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Ivy & Mavis Esposito were healthy twins born at 37 weeks, Sept 13, 2019.
Mavis' feedings began to decline at the end of December after having RSV which led them to seeking out a GI. At their initial visit she was admitted to St.Joseph's Children's Hospital for being dehydrated. After a 3 day stay, with multiple tests and ultrasounds they found "spots" on the liver and what looked like an enlarged heart. They were sent home with acid reflux diagnosis and medications.
During January, nothing improved, she was not gaining any weight and they were sent to a pediatric cardiologist to monitor a heart murmur that was detected by their pediatrician. Their next visit was to a feeding and swallowing specialist whom discovered she was having a very hard time eating because her breathing was very rapid and she was unable to catch her breath. Next appointment was with an ENT & a pulmonologist, but ultimatly decided to check her back into St. Joe's in an effort to speed up the process of seeing the specialists.
She was seen by GI, Pulmonology, Cardiology, ENT and immediately moved to the PICU and placed on milrinone ( a medicine to help the heart function better). She then had an MRI, a CT scan, and another MRI that she was placed under general anesthesia to have her final diagnosis of AVM. They were then transferred to Nemour's Children's Hospital in Orlando to be cared for by pediatric IR (interventional radiology) team.
What is AVM (arteriovenous malformation)??
Normal liver- the heart pumps blood to the liver through artery, blood is delivered to the liver, and then the blood is returned to the heart through the vein.
Mavis liver with AVM- her heart pumps blood to the liver through artery, her veins have malformed and have made connections directly from the artery to the vein causing the blood to be shot right back to the heart without being delivered to the liver. This is causing her heart to not function properly. She has been unsuccessful at gaining weight because she tires very easily when she eats. It’s like she running a marathon while trying to drink a bottle.
THERE IS NO CURE FOR AVM. Our current goal is to correct as many malformations as we can until proper function returns to her heart without having to rely on the heart meds. This is a life long condition for her. She will have to continuously see a GI, cardiologist, and IR for check ups. She might have to have “tune ups” periodically thru her life to fix and new malformations that the body forms and she could ultimately end up with a liver transplant.
Her first 1st procedure was Friday, 3/6/2020 (6 hrs long followed by 6 hrs of being sedated.) They entered through her femoral artery which is high risk for someone her size and she must keep it flat for 6 hrs after to heal and prevent blood clots in her leg.
We know she will need at least 2 more procedures in the next 2 weeks.
Mavis has one sister and two brothers that miss her at home while mom and dad are driving back and forth from Tampa to Orlando multiple times a week.
Any help is GREATLY appreciated as you can imagine what their hospital bills will be.
Mavis' feedings began to decline at the end of December after having RSV which led them to seeking out a GI. At their initial visit she was admitted to St.Joseph's Children's Hospital for being dehydrated. After a 3 day stay, with multiple tests and ultrasounds they found "spots" on the liver and what looked like an enlarged heart. They were sent home with acid reflux diagnosis and medications.
During January, nothing improved, she was not gaining any weight and they were sent to a pediatric cardiologist to monitor a heart murmur that was detected by their pediatrician. Their next visit was to a feeding and swallowing specialist whom discovered she was having a very hard time eating because her breathing was very rapid and she was unable to catch her breath. Next appointment was with an ENT & a pulmonologist, but ultimatly decided to check her back into St. Joe's in an effort to speed up the process of seeing the specialists.
She was seen by GI, Pulmonology, Cardiology, ENT and immediately moved to the PICU and placed on milrinone ( a medicine to help the heart function better). She then had an MRI, a CT scan, and another MRI that she was placed under general anesthesia to have her final diagnosis of AVM. They were then transferred to Nemour's Children's Hospital in Orlando to be cared for by pediatric IR (interventional radiology) team.
What is AVM (arteriovenous malformation)??
Normal liver- the heart pumps blood to the liver through artery, blood is delivered to the liver, and then the blood is returned to the heart through the vein.
Mavis liver with AVM- her heart pumps blood to the liver through artery, her veins have malformed and have made connections directly from the artery to the vein causing the blood to be shot right back to the heart without being delivered to the liver. This is causing her heart to not function properly. She has been unsuccessful at gaining weight because she tires very easily when she eats. It’s like she running a marathon while trying to drink a bottle.
THERE IS NO CURE FOR AVM. Our current goal is to correct as many malformations as we can until proper function returns to her heart without having to rely on the heart meds. This is a life long condition for her. She will have to continuously see a GI, cardiologist, and IR for check ups. She might have to have “tune ups” periodically thru her life to fix and new malformations that the body forms and she could ultimately end up with a liver transplant.
Her first 1st procedure was Friday, 3/6/2020 (6 hrs long followed by 6 hrs of being sedated.) They entered through her femoral artery which is high risk for someone her size and she must keep it flat for 6 hrs after to heal and prevent blood clots in her leg.
We know she will need at least 2 more procedures in the next 2 weeks.
Mavis has one sister and two brothers that miss her at home while mom and dad are driving back and forth from Tampa to Orlando multiple times a week.
Any help is GREATLY appreciated as you can imagine what their hospital bills will be.