April Karmazyn-Wall  

Emanuel Syndrome, Hypoplastic Right Heart Syndrome and has a tracheostomy 

April Eve Karmazyn-Wall was at 38 weeks by emergency c section on 20/11/12 weighing 4 lb 10 oz at the RVI in Newcastle. We found out at 23 weeks that she had pulmonary atresia with small right ventricle. They also advised us to have a test as she was small for dates and they thought it may be genetic. She was taken straight to the Freeman hospital as soon as she was born. We were told she had a lot of other problems, cleft palate, talapies, coanal stenosis, hypoplastic kidneys, anterior anus. She was not passing much stool and was panting heavily. After a few days we received a call in the middle of the night advising she had been rushed to intensive care. We were told she had to have cpr and they thought she had necrotising entrocolitis. This is when the bowel starts dying. She had 4 surgeries to remove most of her large bowel and create an ileostomy. She also had her open heart surgery to place a 3 mm BT shunt. We were told a few times that they only gave her 50/50 chance to survive. Following the surgery we found out April had some Emanuel Syndrome. We had to make a decision to give April a tacheostomy as they were unable to wean ventilation. We were transferred back to RVI PICU in January who had the long hard task of establishing feeds and weaning ventilation. April went into liver failure due to the TPN that was giving her the nutrients she needed while she could not feed. She had several infections that set us back but in may 2013 we could move out of a ward and start planning for home. We had one last trip to the Freeman for a cardiac catheter to open her pulmonary artery. Not long after that we were discharged on 20/7/13. 7 month after she was born.

We have continuing battles with feeding, weight and hospital stays. She gave us another fright in February when they went to do fundoplication, gastrostomy and ileostomy reversal. Another 3 month in hospital with stays between rvi and Freeman as BT shunt blocked causing various complications.

We are finally making progress. We discovered blended diet which has helped us with feeding, heart wise she is stable at the moment. I was recommended to join Lagan's by another heart mum. I soon after looked into applying for a volunteer as we get little in home respite. Our volunteer was placed with us in June 2014 and I am able to have a few hours every week to use how I like



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