When your baby’s heart is sick

My son James loves to tell his story about his heart. So when I have the opportunity to share it for him, I am more than happy to.

We are so grateful each day. James was born in July of 2007 with a congenital heart defect (CHD). I found out he had CHD during my pregnancy at 20 weeks.

The first three days were the worst. We had no idea what was going to happen. And the worst part of all was that during those first, very long, three days, I didn’t get to see James. I hemorrhaged during the birth and was not doing well myself and he was wheeled away to the cardiovascular ICU.

We then found out the details of what was to come. James’ had Tetralogy of Fallot with Pulmonary Atresia (TOF with PA) and is a rare and multifaceted heart defect. It only occurs in five of every 10,000 babies. This type of defect encompasses four different conditions, including a large ventricular septal defect (VSD), pulmonary stenosis, right ventricular hypertrophy and an overriding aorta.

When James was only two weeks old, he had a BT shunt procedure and had to have a feeding tube put in at the end of August 2007. And in October 2008, he then had an open heart surgery that involved a right ventricular outflow tract patch procedure to repair his tetralogy.

From the time James was born until 2009, we lived in Naples, Florida. And in 2009, we knew we needed to move, as the nearest children’s hospital was two hours from our house and it was becoming much more difficult to make the trip. Every time James had a procedure or was hospitalized, we had to pull my oldest daughter out of school and be at the hospital for days at a time. She was missing a lot of school and my youngest daughter was about to start school and we didn’t want to do the same to her.

So we made the decision to relocate back to the Chicagoland area so that we could be closer to my parents who could help us in those times of need.

We were so grateful Advocate Children’s Heart Institute was close by.  We went to our first appointment and I will never forget the face of the echo technician, Teresa, when she was doing James’ echocardiogram test and found something.

We were told that James was going to need another open heart surgery. They found a pseudoaneurysm, which is a hematoma that forms resulting from a leaking hole in an artery of the heart. Dr. Michel Ilbawi, a pediatric cardiovascular surgeon with Advocate Children’s Heart Institute, would need to operate immediately.

My husband and I cried and knew we had to leave it to the doctors to save his life. On the day of his surgery everything seemed to go really slow. We were nervous.

Then the good news came. Dr. Ilbawi said that James did well but when they opened him up the aneurysm popped. My heart stopped. But they were able to repair him and was even able to come home in five days.

James is a strong little boy with a great outlook on life. He talks to his classmates and others about how his heart is sick and doctors have to cut him open to fix it.

James and his story are so important for me to share because it shows other parents that there is hope. My obstetrician in Florida, before I found out what he had and sent us to All Children’s Hospital in St. Petersburg, advised us to think about terminating my pregnancy. I can’t tell you how grateful I am for my beliefs and that we waited.

It makes me appreciative for every day with James but also there is the reality of all of these kids who have these conditions. And that it is why it is so important we continue to get the word out about CHD and to tell other parents that they have a support system if they need it.

James’ doctors, Dr. Jacobs and Dr. James Huhta, in Florida still keep up on his treatment and work with Dr. Ilbawi and Dr. Andrew Van Bergen’s office.

I can’t thank Advocate enough for what they did for us then and continue to do.