Bobby's Heart Defect (An FAQ and Prayer Request)

To answer a question many people have asked - Bobby was diagnosed with a heart defect during my level II ultrasound when I was 20 weeks pregnant with him. We were also told that this type of heart defect is most common in children with Down Syndrome. We chose not to do further genetic testing, since Bobby was meant to be our child, regardless of congenital heart defect or intellectual disability. Over half of children with Down Syndrome are born with congenital heart defects.

Bobby's congenital heart defect is called an Atrioventricular Canal Defect (AV Canal Defect, for short), or Endocardial Cushion Defect. Bobby's full diagnosis is "Atrioventricular Canal Defect, - complete, unbalanced".   You can read more about the physiology of this congenital heart defect here.

Because of Bobby's particular anatomy, he is not eligible for the standard one-time surgical repair for this kind of heart defect. Instead, the cardiovascular surgeons opted for an approach that involved 3 cardiac surgeries:

1. Pulmonary Artery Band (July 2008, when Bobby was 3 months old)
2. Bidirectional Glenn Shunt (February 2009, at 10 months of age)
3. Fontan Procedure (April 15, 2011, at age 3)

So, as you can see from the dates above, we will soon be at what we hope is Bobby's last heart surgery. We are extremely anxious, due to his recent hospitalization and discussions with his doctors, that he may one day require a pacemaker or even a heart transplant. One thing we've learned is that there are no guarantees with any of these procedures. Bobby was supposed to be in the hospital for 5-7 days for the Bidirectional Glenn Shunt, and he ended up in the pediatric intensive care unit for a month, due to problems maintaining his blood oxygen levels.

We are hopeful that the Fontan will be successful. We pray that Bobby will be able to move ahead without the burden of dealing with cardiac symptoms - symptoms that have resulted in problems with feeding that have required tube feeds since one month of age, laboured breathing and poor stamina that have adversely impacted his progress towards learning to walk, not to mention the toll of countless hospitalizations (14 to date), procedures, and emergency room visits, that have contributed to his delays in gross and fine motor skills, intellectual abilities, and his overall well being.

We hope and pray, and hope you will pray with us.