Calandro, Nicholas

[admin]

[left:67e931aed3]http://www.cherubs-cdh.org/Album/new/calandro-nicholas.jpg[/left:67e931aed3]Thank you for getting in touch with me through MUMS. They're a great organization. It's been a long and lonely road, and it's nice to hear from people that have been there. I wanted to write to you not only to thank you but to tell a bit of Nicholas's story. I'll try to keep it brief, but he's been through a whole lifetimes worth of surgeries. Nicholas (Angel Face) Calandro was born with a pre-diagnosed diaphragmatic hernia. We found out 2 weeks prior to the C-section. Before this I had a healthy pregnancy. Of course, he was intubated immediately. Although the ECMO machines ran next to his bed for three days, we never did have to use them. Thank God! But thank God they're available for those who need them! The hernia repair was done on his 3rd day of life. All supposedly went well. Little did we know that he was going to develop adhesions on his bowel from that surgery. At just three months old he was labeled "Failure to thrive". He had severe strider and excess cartilage around his airway. He then developed a double incarcerated hernia. When the surgeon went to repair this he saw peritonitis and ended up doing exploratory surgery. That's when they found the adhesions and twisted dead bowel. The surgeon ended up removing 85% of upper bowel (Short Bowel Syndrome). He now gets his main nutrition through a central broviac line with TPN feedings & continuous G-tube feeds to stimulate the bowel to grow. Since Nicholas had multiple medical problems, they did some chromosome testing. His results showed that he has an unbalanced translocation of 11 and 22 chromosome, called "partial trisomy 22". Further testing on me (the mother) shows that I have a balanced translocation. My chances of having another child with this syndrome is about 33.3%. In my research of this chromosome abnormality I found that a diaphragmatic hernia is fairly common. Some of Nicholas's birth defects include; Partial Trisomy 22 (this explains all of the following defects, diaphragmatic hernia (repaired), post cleft palate (repaired), Ileostomy (repaired), Severe Laryngomalacia, Reactive Airway Disease, Grade III Vesicoureteral reflux with Proten Urial & Hamaturia, Metabolic Bone Disease, Short Bowel Syndrom Central Hyperalimentation, Seizure Disorder (no seizures since last year), had a subdual drain, Hypocomplementemia causing Nephritis, Subglottic Stenosis, Gastroesophageal Reflux, had a cricoid split, Criyptosporidium Gastitus, Recurrent otitis Media, Recurrent fevers, Large Ventricles, Abnormal EEG, Developmentally delayed, and Double incarcerated hernia (one side repaired). Nicholas is 17 months old. He's come along way medically. We still have a long way to go. At least another year on the TPN IV feedings. But because of his chromosome abnormality as well as his 18 surgeries, he is quite developmentally delayed. He is just learning to sit up, but mostly needs to be supported. He doesn't like to day on his tummy and doesn't use his limbs too much. The developmental part is becoming very hard to deal with. I tend to dwell to much on what it's going to be like down the road. Nicholas is doing very well. Maybe it's because of all the cherubs I have through out the house! My home nurses call him "The little Cherub" with his blonde curly hair and his chubby cheeks and body! Call if you'd like and keep up the great work! I know what you're doing with your organization is helping people immensely! It did me! Writing this letter has been great therapy!



Written by Nicholas' mom, Julie Ann Calandro (Florida)
1996