Meet Baby Ezekiel

Expecting baby No. 4

In the fall of 2021, Ben and I learned we were expecting our fourth child due March 2022. I attended the required ultrasounds on Manitoulin Island. At the 22-week anatomy ultrasound, our baby boy was moving around so much the ultrasound technician could not get an accurate reading of his heart. At the following appointment, the little guy was head down in the birthing position and still moving around far too much; the technicians were concerned that they still had no real information about his heart.

Not A Good Diagnosis

One of the local techs gave us a diagnosis of a potential heart problem without any imagery to confirm the diagnosis. It was suggested that we go to Sudbury for an ultrasound and a few days later that is exactly what we did. We were praying for good news however the results were the same with baby boy remaining uncooperative. Ben and I were then told we would need to make the trip to Toronto for detailed imagining of the heart (#echocardiogram). Ben and I travelled to Toronto hoping for answers and believing that our baby boy would be ok.

Unforgettable

Friday, February 11, 2022 would soon become a day we would never forget. After a series of tests and scans, the cardiologist confirmed that our precious baby boy suffered from a rare birth defect called Heterotaxy Syndrome. As we sat in a room of half a dozen doctors, we came to understand that though this defect involves the heart and other organs, there are different forms of the condition varying in severity. In addition, organs such as the stomach, intestines, liver and lungs may be in abnormal places in the chest and abdomen.

Ezekiel’s specific diagnosis is the worst-case scenario we soon found out. Children with this condition have multiple heart defects. They also have abnormalities of the blood returning from the lungs to the heart. Ben and I were also told that the spleen was absent which meant that an infection can quickly become life-threatening. The liver and other organs are also on the wrong side of the body. With his condition, Ezekiel will require a series of 2-3 open heart surgeries. The first, if necessary, would happen in a week or two following his birth, the second at 4-6 months and the third at 2-3 years. Ben and I were also told that Ezekiel’s chances of survival to age 5 was about 66%, but that this would improve after he turned 5. The plan was that I would travel to Toronto; give birth at Mount Sinai and then Ezekiel would be taken to Sick Kids.

Heart Full of Joy

Ezekiel Jabulani didn’t want to wait that long, however, and made his arrival into this world almost 4 weeks early on Feb 19 at 11:23 am at the Sudbury Hospital weighing 6lbs 2 oz. So far, he has done as well as anyone could have hoped – Ben and I have much to be thankful for! On Tuesday, February 22 we were transported by air to Sick Kids in Toronto. If you didn’t know there was a problem inside that little body, you certainly wouldn’t know it looking at him; he is a beautiful sweet boy!

What a blessing it is to be his parent, our hearts as full.