Born with multiple heart defects, Naomi James spent her childhood ‘afraid to do anything.’ Today, she and her doctors talk about possibilities for her treatment and her life.
Naomi James had her first open-heart surgery before she was 3 months old. She was born with a combination of four defects that required her to undergo surgery as a baby. She had another open-heart surgery at 25, two years after delivering her baby boy.
Now pregnant at 34, James’ cardiologist is optimistic that her repaired heart can hold up to the stress.
James wasn’t planning on having children. Since childhood she has had restrictions because of her congenital defect known as Tetralogy of Fallot. She also had childhood asthma and other pulmonary issues as well.
“When I was a child, I was afraid to do anything,” said James, who grew up in Atlanta but moved to Arizona four years ago. “I didn’t run. I didn’t do any sports.”
When she turned 19, James had a “hard-truth, tough-love kind of conversation” with the medical team treating her condition as an adult. They talked about her life expectancy, how her heart would deteriorate year after year and how she “should not, for any reason, have any children.”
James told her future husband the news, and he was fine with it. They took precautions. James was on birth control and planned to get her tubes tied, but in the small window she was off the medication awaiting surgery, she got pregnant.
“My pregnancy was pretty stressful because everyone was more just scared,” James said. “They just felt as though it was a death sentence.”
Because her husband was a soldier, the obstetrician at the military base where he was stationed wrote a letter advising that he be transferred as close to family as possible “due to the possibility of losing his wife and child.”
“I’ll never forget it,” James said. “That was the first time I that I truly realized how serious my heart disease was.”
Things went well until the third trimester, when James began to have swelling and shortness of breath. The delivery was “pretty intense,” but her son was fine and she had survived.
As a military spouse, the first year was hard because James’ husband was gone for training or deployment. By year two, her heart was showing problems. James would get winded going up stairs, and she couldn’t go on long walks. Her ankles and feet would swell on long car rides. She had trouble with a leaky valve and enlarged right ventricle. And her echocardiogram didn’t look good.
“I think it’s just time for us to do the surgery,” her cardiologist said.
Once the needed repairs were made, James was surprised how extensive the recovery was, even though she was a bedside nurse who had taken care of cardiac patients after surgery. She had to change jobs because she didn’t have the upper body strength to handle the work, like pushing a loaded stretcher. James got a master’s degree and became an educator at a nursing college.
The hourlong drive to work is really hard on her this pregnancy, which happened during another attempt at tubal ligation. While her doctor has reassured her that her heart looks good and her repair is only seven years old, James is more worried this time.
“The first time I didn’t have (fear) because I was like a deer in headlights, blindly optimistic,” James said.
Worst-case scenario, James needs another repair. With medical advancements, there are more options such as going through an artery in the thigh and not opening James’ chest again.
“The conversational tone is so different than when I was 19,” James said. “The tone is all about the possibilities, the options and the treatment plan, and the different avenues for my health.”
Hopefulness is part of the journey she wants to share.
“I want women with heart disease to still have hope that you can live a full life, that every day and every decade there are medical advancements, there is better access to care and to treatment,” she said. “It’s not going to be a perfect life, but you can still live a good and full life.”
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