Hypoplastic Left Heart Syndrome
In late May 2006, my husband Brian and I found out at a 21-week ultrasound that our second son had a rare and serious heart defect; he had a hypoplastic left heart, which meant that the left side of his heart—the side that pumps oxygenated blood to the body—was underdeveloped and would not function shortly after birth. We were devastated.
We were given three options:
terminate the pregnancy, compassionate care after the child was born or a three-staged surgical repair of the baby’s heart. Knowing that our child would be a fighter, we opted for the surgical route.
Most of the summer of 2006 was a blur for us, but one thing was clear. We had to find the best possible place to treat our baby with the highest mortality rates for his condition. We chose the Children’s Hospital of Wisconsin.
Liam was induced early in the morning of Monday, September 25 and greeted by a room of specialists. He spent a week in the NICU and had his first surgery, the Norwood, on Monday, October 2. Dr. James Tweddel performed the surgery. He spent only 19 minutes in cardiac arrest and came off the heart-lung machine without any problems. Following surgery, Liam’s chest remained open for one week due to swelling. It took two attempts to close his chest. Overall his surgery was “textbook” other than a blood infection he contracted that required IV antibiotics and an extended hospital stay. The extended stay allowed us time to work with a speech therapist to teach Liam to drink from a bottle—something he wasn’t able to do until he was over two weeks old. After seven and half weeks in Milwaukee, we were reunited with our older son, Finn, who had been a trooper and dearly missed.
Between his first and second surgeries, we monitored Liam’s oxygen levels, weight, and heart rate daily. He took several medicines during this time. On the Thursday after Thanksgiving we brought Liam up to Milwaukee for a check-up with his cardiologist. The day was a whirlwind. Liam ended up getting admitted, had a cardiac cath performed the next day, and his second surgery, the Bi-Directional Glenn, the following day. Liam sailed through this surgery and was home within a week.
In February 2007, Liam began physical and developmental therapy. Considering he spent the first four months of his life on his back, he quickly made up for any set-backs from a physical and developmental standpoint. He began to hit the various milestones he was supposed to.
On October 30, 2008, just after celebrating his second birthday, we took Liam back to Milwaukee for his third surgery—the Fontan. Overall, everything went smoothly. But, it was tougher handing him over for surgery this time. I was terrified that we would not get him back. His resiliency and ability to heal without complaint was humbling. His progress over the last year has been remarkable: he’s talking in complete sentences, he’s running, he climbs the stairs without being winded, he rides a bike (with training wheels), he’s learning his numbers and colors at preschool, and he’s a loving big brother. In September he had his final evaluation with the developmental physician who follows kids who were in the NICU. He demonstrates no cognitive or neurological delays or behavioral problems common with some heart kids. In all of the tests, he scored at or above where a “normal” kid should score. Dr. Bauer said, “Liam beat the curve. He got lucky.”
Liam has changed our lives in ways different than a healthy child. Perhaps when you risk losing something as precious as a child, you realize the gift you’ve been given and your priorities change. Every day when Liam hugs us tight and rests his head on our shoulders, we are reminded that we’ve been given a little miracle. Liam has expanded our circle of friends. He’s introduced us to dedicated and impressive caregivers and “heart families” with great strength and wisdom. He’s also reminded us of the importance of family, especially in tough times when we couldn’t have gotten by on our own.
*Written by: Bridget O’Meara, Liam’s mom
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