Alexander’s Story…

Alexander Monto was born on December 20, 2013 with congenital heart defects and a right clubbed foot. He received treatment for his clubbed foot and congenital heart defects at St. Peter’s University Hospital before being transferred to Children’s Hospital of Philadelphia.   Before the age of 5 months, Alexander had an NG tube put in to monitor feedings, required surgery to repair Phyloric Stenosis, underwent 2 Cardiac Catheritizations and 3 open heart surgeries to repair his Acyanotic Congential Heart Defects including Ventrical Septal Defects (VSD), Atrial Septal Defects (ASD) and a non-formed Aortic Valve. While recovering from the heart surgery Alexander was diagnosed with Necrotizing Enterocolitis (NEC) which is a gastrointestinal disease that causes infection and inflammation to the bowel. Alexander then had a Central Line places in a vein near his heart to better deliver the needed antibiotics, heart medications and IV fluids.

Even though Alexander was hospitalized for over 3 months he continued to be a happy and joyous little boy.  Always with a smile on his face, even the doctors  were taken back at how well he recovered from the numerous surgeries.

Now that Alexander is at home with his family, he has to continue with weekly visits with occupation, physical and speech therapist, along with doctor check-ups, which all add up to significant medical costs. Alexander missed many crucial parts in his development including learning to eat which has had a dramatic effect on his weight gain. At 16 months of age, Alexander only weights 14 pounds. Alexander will continue to undergo testing as his family braces for the years of therapy that are ahead for him.

UPDATE APRIL 2016

During recent routine check-ups, Alexander’s family learned that even though there is good rotation and flexion in his right foot it is still turning in and in-turn Alexander is walking on the side of his foot instead of flat on the bottom. He can have a procedure to move a tendon in the top of the foot to straighten it out but this cannot be done until after he turns 3 years old and he would have to be casted for a few weeks before hand. Until that time Alexander is to continue wearing a brace at night while he sleeps.

Alexander’s Cardiologist has advised the family that she is concerned with his latest ECHO. The latest measurements showed increased regurgitation from the heart valves along with progressive dilation of the left ventricle. Because of these changes she is requesting that Alexander be admitted to CHOP to have a Cardiac Catheterization and MRI done to assess the changes. In the meantime, Alexander’s medications have been adjusted to help support his heart functions.

Alexander is just over 2 years old and only weights 17 pounds, as he missed many parts of his crucial development including learning to eat which has had a dramatic effect on his weight gain. Alexander and his family are eagerly awaiting a date for the next round of testing as well as continued work with speech therapists, feeding therapists, along with routine doctor check-ups, which all add up to significant medical costs.