by Sara Sundholm

Our son Jacob is four years old and just started preschool. He is a precocious boy who loves to ham it up for the camera and doesn’t shy away from all the boy things that make my mama heart skip a beat.

When I look back on his heart journey, the single hardest day of my life was when Jacob had his surgery on January 21, 2014, at just 11 days old.

Jacob was born one month early, in our bathroom, completely unattended as he arrived quickly. We were sent to the hospital overnight so nurses could keep an eye on his blood sugar levels.

The next morning, we were sent home with a clean bill of health except that his bilirubin levels were a little high. For the next five days, our midwife came every day to check on them. On the sixth day, we were admitted to hospital overnight for phototherapy because his levels got too high.

While we were there, the nurses checked his oxygen levels, which were low. At first, they thought it was the monitor and tried a few others. Every few hours, they came in with warm towels and tried to get a higher reading.

The next morning, the resident pediatrician was discharging us when the nurse-on-duty mentioned Jacob’s oxygen levels were quite low and suggested a checkup with the on-call pediatrician. He listened to Jacob’s heart and said there was a murmur. The cardiology team from BC Children’s Hospital just happened to be there that day conducting a rural clinic.

The on-call pediatrician spoke with Dr. Human and his team and asked him to do an echo and ECG. After the tests were done, we were asked to sit down and given the difficult news that Jacob was born with a rare congenital heart defect: supracardiac total anomalous pulmonary venous connection (TAPVC).

We were flown out that day to BC Children’s and prepped for his open-heart surgery, which was scheduled to happen in four days.

Time stood still, and there was a lot of emotion in the room. Back at home, we had a four year-old and a 10-month-old, from whom I had never been apart.

The flight team came to get us at 4:00 pm. I said goodbye to my family and off Jacob and I went.

We arrived at Children’s and were brought to the pediatric intensive care unit (PICU) for the night. I slept in a cot beside his bed. I was completely overwhelmed and in a state of shock. The next morning, he was deemed stable enough and we were moved up to the unit to prepare for surgery.

We were blessed to have Dr. Campbell and his team repair Jacob’s heart. The surgery took eight hours, but it went very well with no hiccups.

One hour after it ended, we were allowed to go in and see him in the PICU. My husband stayed with Jacob while I went to the pumping room.

On my way back into the PICU, I heard monitors going off and saw nurses and doctors running towards Jacob’s bed.

The scene plays over again and again, in slow motion, in my head: I began screaming out to my husband, “What’s going on!!??” while he just stood there in disbelief. We were ushered into the consultation room and told that Jacob’s heart had gone into hypertension and stopped.

Thankfully, he was resuscitated and stabilized without cardiac and respiratory support.

Jacob spent a week in the PICU, as he wasn’t doing well with breathing on his own and they couldn’t extubate him. Finally, the breathing tube was removed and we were moved up to the unit.

Discharge was planned for January 31. On the 30th at bedtime, I was rocking Jacob to sleep when, all of a sudden, the monitor started beeping and our nurse rushed in and took him from me. His heart rate spiked at 302 BPM. He was having an episode of supraventricular tachycardia.

It took three hours and some miracle medicine to break the cycle and get his heart rate down to normal.

We were kept for another six days and given training on how to check his heart and what to do if he had another episode.

On February 6, we got to go home. It was a bittersweet moment. It was scary to leave the safety of the hospital, but I was glad to be able to try and start our “normal” life.

In the fall of 2014, a few other local heart moms I’d met through Facebook decided to get together and start having coffee. What started out as a humble group turned into a Children’s Heart Network monthly coffee support group. We welcomed any new families that were going through what we all had experienced.

It was invaluable to have this group. It helped me get beyond the overwhelming crush of knowing my child was incredibly fragile.

Over the years, we have also had a few family gatherings as well. It has been such a support for Jacob too, knowing he’s not the only one who was born with a broken heart that needed surgery. He is comforted, knowing other children have “love line” scars just like he does, and it helps him be proud to rock them!

We will always be grateful for every single person at BC Children’s who had a hand in saving our son’s life. Without them, he wouldn’t be here today. ♥

Heart warrior—all healed.

Jacob heading back to school.

“Jacob’s Story” is from our fall 2018 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.