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Life with HLHS: Keeping up with Lucas

  • Rebekah McGowan
  • 7/22/2014 12:00:00 AM
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HLHSWhen we first learned that our son would be born with Hypoplastic Left Heart Syndrome, we were devastated. But once the shock had worn off we were desperate to talk to other families who had been through the experience. We asked our doctor about support groups, but he was less than impressed with what was available.

“They’re out there, but it’s mostly propaganda,” he said, scrolling through a Google search of HLHS communities. “Regardless of what you may read, these kids can’t run and they can’t do sports.”

And while he wasn’t impressed with what Google had to say about the future of kids with HLHS, he was impressed with what Boston Children’s Hospital’s Heart Center could do for children with the condition—and I’m so glad he was. Through his referral we went to Boston, and there we found the hope we needed. It was there that we learned that our son had a good chance of having an extraordinary quality of life under their care. We were also told that other than contact sports, our son could do anything he wanted to.

Over the years Lucas continued to thrive. And for each year he got stronger we participated in the NSTAR walk for Boston Children’s Hospital. It’s our way to say thank you to the hospital that saved him, and to help fund additional research, particularly in the areas of congenital heart defects that affect 1 in 100 babies born every year.

Christopher Baird, MDSomewhere along the line Lucas’s story was covered in the local news. Suddenly we were getting emails from many people who saw our story and could relate because it was so much like their own. We were now in a position to provide hope instead of looking for it. One of these emails connected us to the family of a little boy named Daniel. He has the same condition as Lucas and was only 6 months younger. He also had the same surgeon, Dr. Christopher Baird, a pediatric cardiovascular surgeon in Boston Children’s Complex Biventricular Repair Program.

This year we walked together in the NSTAR Walk for Boston Children’s Hospital as Team Lionhearted.

Daniel and Lucas, affectionately known as “the Baird Boys,” were our miracles and Boston Children’s Heart Center had been our miracle maker. Each boy had a series of three open-heart surgeries, specially designed to re-route the blood flow so they could actively and effectively participate in everyday life despite only having half a working heart. To see them together on the day of the Walk—bonded by a mutual love for cars and trucks—was beautiful. They don’t know that they have the same scars, or take similar medications; all they see is a friend willing to share his favorite tractor.

HLHSWhen my husband and I look at Daniel’s parents we too see friends that we share so much with. Our sons had the same Boston Children’s doctors and nurses, stayed on the same floor, in the same beds and played in the same play rooms. They’ve lived through the same tears and smiles we have, fought the same fears and breathed equally loud sighs of relief.

It is a powerful bond that we will have for a lifetime.

When Team Lionhearted walked together it was a beautiful sunny day. The buzz of excitement in the air was infectious. Everyone there had been touched in some way by Boston Children’s and was joyful and grateful to be there. Even those who had lost their battles found hope in the future research being done and I hope they could find some solace in knowing they had done everything they could.

But when I talk about our “walk” that day it’s a little misleading… NSTAR’s “Run” for Boston Children’s might be a more appropriate title in our case.

HLHSOn the eve of Lucas’s final surgery we told him he’d soon be strong and fast like a monster truck. Seven days after open-heart surgery we took him to the gardens and he tried to run. In the end it looked more like a fast-paced walk, but with each quickened foot plant you could see the pride beam on his face as we cheered him on in the background. A month or so later and he could really run without tiring for the first time in his life. Watching him go up and down the yard, full speed without any sign of tiring, brought tears to my eyes and made Lucas feel invincible.

At the start of the Walk Lucas declared: “I want to RUN!” so my husband and I took turns running along side of him. Before I knew it we had reached the one-mile marker. Lucas, a three year old with half a heart, had just run a mile while we tried to keep up. He had to walk for the next mile (and sat on his daddy’s shoulders for part of it), but he didn’t lie down. He didn’t beg to be carried. He didn’t motion for his stroller.

After crossing the finish line and getting a snack, he said “I’m gonna run again!” I picked up the pace beside him and he started back through the course again, jogging with seemingly endless stamina. It was a life-changing day for all of us. At school the next day he told everyone how he “ran and ran and ran at the Boston Walk.”

I went on a run the next day and as I got to my 1.5 mile marker, where I typically turn around, I thought of Lucas, the 3-year-old with half a heart who ran over a mile the day before. I laughed out loud thinking of his courage and strength and I kept running. I ran faster than I have ever run and further than I have run in years, all the time laughing, crying and thinking of my miracle son.

He doesn’t know he has half a heart. He doesn’t know that he is brave and strong, and that it’s amazing that he can run. But I do. I know it and it inspires me to run, and work, and try a little harder in everything I do because I want to be as lionhearted as him one day.

HLHs 

 

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