When her son was diagnosed with severe heart problems, she blamed herself. Could she get over it?
By Jaime Aron, 91ÊÓƵ News
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With her mother in labor, then-17-year-old Jamie Dawson sneaked past nurses and headed for the delivery room.
The door was cracked open just enough for her to hear baby brother Max cry for the first time. Dawson felt a surge of love like she'd never experienced. When she became the first person to hold Max other than his parents, the feeling deepened. Snuggling him close, she whispered, "I will always have your back."
She left for college a few months later. Instead of spending weekends doing the things freshmen do, she drove 2 1/2 hours home to play with Max. She ended up transferring to a school near her hometown of Whiteville, Tennessee, to spend even more time with him.
Once she started a career as an X-ray technologist, Dawson still saw Max when possible. But her world no longer revolved around him.
At that point, in her early 20s, Dawson made an interesting decision. She vowed to never have children.
It wasn't because she'd had her fill of motherhood. It was because of fear.
Fear that she wouldn't have that same magical bond with her own child. Fear that no other baby would be as perfect as Max. Most of all, she said, it was fear that "I wouldn't be good enough to raise a kid the way they deserve to be raised."
Then, when she was 26, her other brother had a baby. The moment Dawson held her niece, she felt that surge of love again. It left her with a new sense of strength and confidence. She knew she wanted to one day have a child.
Getting pregnant turned out to be challenging. She was 31 when a home test delivered the good news.
Once Dawson was far enough along to learn her baby's sex, she asked a fellow tech to take a peek. A boy! Just like her husband hoped and, of course, just like Max. Knowing that, the first ultrasound exam at her OB-GYN's office should've been anti-climactic.
What happened next sent her life in a new direction.
Over the last 11 years, she's faced many of her worst fears. Her faith has been rocked. Her relationships, tested. Her career, changed. And yet … she's happy. Grateful, even.
"One of my favorite quotes is that God has to take you from where you thought you needed to be to a place you never wanted to see, so you can grow into the person he called you to be," she said. "I honestly feel like that's what happened to me."
***
The OB-GYN's ultrasound tech couldn't clearly see inside the baby's heart. The doctor couldn't either.
Dawson knew things like this happen all the time. She happily went to a high-risk doctor who had better imaging equipment. She scheduled the test during her lunch break and planned to be on call that night.
The exam went on too long. The tech became too serious. "There's something wrong with our baby," Jamie told her husband, Layne Dawson. He was urging calm when the doctor walked in.
He put it bluntly: "Your baby has four anomalies in his heart."
Their son had an atrial septal defect, a ventricular septal defect, tricuspid atresia and a hypoplastic right ventricle. In simple terms, he had two holes in his heart and a malformed valve, leaving his right ventricle too small to do its job.
The issues are often repaired through a series of open-heart surgeries done at birth, three months and three years.
Jamie spent the next three days sobbing, praying and learning about those conditions. Mostly, though, sobbing.
Maybe she'd been right the first time; she wasn't qualified to be a mother. "I can't even get the pregnancy right," she thought. "How am I going to raise such a sick baby?"
On that third day, Layne was making dinner and Jamie was in bed. Laying on her left side, with her right arm draped over her 19-week baby bump, she told God, "I can't handle this. I'm not strong enough. I don't – "
The interruption was her baby kicking. For the first time. While she'd felt movement before, this was the first no-doubt kick and it landed smack on her palm.
She was sure that sensation at that moment was a sign.
"I will be able to do whatever I need to do for this child because of God," she thought.

***
Jackson Layne Dawson arrived Aug. 18, 2014.
He weighed 7 pounds, 7 ounces, measured 20.5 inches and made zero sounds.
"Is he dead?" Jamie asked Layne.
By the time Jackson cried, doctors and nurses were rushing to keep him alive. Layne held him briefly. All Jamie got was a quick look. Beneath an oxygen mask bigger than the baby's head, she saw a dusky gray face; his arms and legs were deep shades of blue and purple.
Yet Jackson got lucky.
He didn't need the first open-heart surgery after all. He underwent a less invasive procedure. A week later, he was home.
His skin still looked blueish. It would for a long time because his various issues compromised the amount of oxygen in his blood. Jamie monitored his oxygen level with a pulse oximeter, a small, boxy device with a red light that clips onto a finger or toe.
A healthy pulse ox reading is 90% or more. Considering Jackson's condition, 80s were OK.
During his second week home, he dipped into the 70s. A weeklong hospital stay followed. On Jackson's second day back home, a low pulse ox reading prompted another trip to the emergency room.
That surgery Jackson avoided? He needed it right away.

***
The operation went well.
Jackson went home eight days later.
However, the best-case scenario was that Jackson would return for his next open-heart surgery in less than three months.
Jamie didn't keep a countdown clock, but that looming date kept her feeling unstable. Well, that and Jackson's nonstop screaming.
She thought it was the pain of having his chest wired shut, even if doctors insisted he was too young to feel it. So maybe it was colic. Whatever the reason, Jackson raged at all hours.
"I really am a failure," Jamie thought. "I can't even comfort my own baby."
She rarely slept. Negative thoughts invaded her mind. She became convinced she'd done something to cause Jackson's heart defects. She began spending way too much time trying to figure out what it was.
She didn't smoke or drink alcohol. So maybe something happened at work.
She remembered times when her heart rate spiked, like while scrambling from one part of the hospital to another or helping a cardiologist thread a catheter into a heart. It never lasted long – but maybe long enough?
Then there was radiation exposure. She always wore a protective 20-pound lead apron. Maybe some got through anyway?
When Jamie wasn't ruminating on guilt, she was apologizing to Layne.
She started doing this when she was pregnant, following Jackson's diagnosis. Layne always insisted she didn't need to, that the baby's heart problems were a fluke of nature. She knew he meant it. When her head was clear, she knew he was right. Except, her thoughts were rarely rational. Some days she told herself that her in-laws – her sweet, loving in-laws – probably regretted Layne marrying her "because another woman would have given them a grandchild that didn't have all these issues."
Back then, Layne became afraid to leave her alone; he would only go to work if someone else was with her or checking on her. Now, as they waited for surgery No. 2, she was again saying how sorry she was.
Jamie knew everyone was concerned about her. That became something else to worry about.
There was only one place she could go to escape.
Her shower.
There, she could weep and wail without anyone seeing or hearing. She could ask God everything from why she was given a child who would soon have a second open-heart surgery to why she couldn't get him to stop screaming long enough to take a bottle of milk.
One day, while holding her fragile, fussing baby, Jamie turned on the sink and waited for the water to warm up. Jackson stopped shrieking. She turned off the sink and he cried again. She turned on the water and he quieted.
She called Layne with the good news. On his way home, he bought a sound machine.
With this problem solved, Jamie was finally able to prioritize something else she'd been meaning to do.
Layne's mom had passed along two outfits Layne had worn as a baby – a red elf costume and a blue and white checkered onesie. Jamie wanted pictures of Jackson in those clothes, and a photo of her and Layne kissing Jackson's cheeks at the same time.
She wanted to take these pictures before the surgery. Just in case.

***
The operation again went well, as did recovery.
Jackson was home in time for his first Christmas. For Jamie, the emotional roller coaster she'd been riding since those ultrasounds in March was finally slowing down.
Sure, Jackson had another open-heart surgery in his future. But it wasn't supposed to be until his third birthday. That was two years and nine months away – an eternity compared to her past nine months.
A few weeks into this new normal, Jamie took a call from an uncle.
He's only a few years older than her, so they've always been close. She knew he'd been through tough times and that those events had drawn him away from God. He was calling, however, to tell Jamie he was reading the Bible again. Because he considered Jackson proof of a higher power.
"I grew up hearing my whole life that God works in mysterious ways," Jamie said. "That was the first time I could really visualize it."

***
Nurturing is clearly Jamie's default setting. In the years between caring for Max and Jackson, her outlet for it was her job.
She had a knack for comforting people – colleagues, as well as patients – in the most delicate moments. Her bosses appreciated that, as well as her skill; she was the rare technician certified to use every imaging machine they had.
Jamie continued working through Jackson's first birthday. Then she got to the point where she could no longer handle the intensity and the schedule of working in a hospital.
She took a 9-to-5 job at a bank. Her hospital boss offered to double her pay; she laughed because she was already cutting her salary in half. Still, he held her position open for six months in hopes she'd come back.
She eventually found her way into mortgage lending. It's no surprise that there's a nurturing aspect to her specialty: helping first-time home buyers.
A few months into her banking career, Jamie was driving home from work when a commercial came on the radio. A voice urgently announced, "If you took (a particular asthma medicine) while you were pregnant …"
Yes, she'd taken that medicine. Only during the six weeks or so before she knew she was pregnant. Back when she was beating herself up searching for the cause of Jackson's heart problems, she'd hardly considered this. Maybe this was her mistake?!
Just like that, her thoughts were again hijacked by blame, shame and guilt. Her mind also kept spitting out a new message: He's going to be taken from me too soon. What's going to happen in 15 years?
About a month into this funk, someone told Jamie that worrying about an unknown future was robbing her of the joy and memories being made in the present.
That framework helped. She began focusing on good things.
"If something happens, we'll worry about it then," she told herself. "Today, let's soak up all these laughs and smiles he's giving me."

***
A few months into this new outlook, something else began nagging Jamie.
Jackson's skin looked bluer. His pulse ox readings began dipping into the high 70s. The danger zone was 75%.
Jamie began lying awake at night. She feared that when she went to get Jackson in the morning, "he's not going to be alive anymore."
At his next checkup, Jackson's pulse ox was 77%. She persuaded the cardiologist to take action. He performed a catheterization procedure. What he saw inside Jackson's heart prompted open-heart surgery No. 3.
This operation – the final one in the series, the one that would get his heart as close to normal as possible – was supposed to happen around age 3. Jackson wasn't even 2.
After the surgery, the doctor told Jamie and Layne everything went well. They could go see Jackson in the recovery room.
They walked in, looked at Jackson, looked at each other and said, "He's pink!"
Then Jamie looked at the pulse ox monitor: 97%.
She hadn't felt such elation since the night of her home pregnancy test.
A month later, she tested positive again.
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***
Jamie was carrying another boy. Right away, her new coping skills were tested.
Doctors believed this boy also had a heart problem, although different than Jackson's.
When Cooper was born, his heart was healthy.
About a year later, Jamie went for a physical with a new primary care doctor. The doctor asked many questions. Jamie's answers led to a diagnosis she'd never considered: post-traumatic stress disorder.
"Even though I wasn't in a dark place anymore, the anxiety had gotten to the point where I couldn't enjoy anything because I was waiting for the worst to happen," she said.
The diagnosis alone provided some relief. She began seeing a therapist. She knew she'd found the right medication when Layne said, "You're back. You're your normal self again."
Actually, she was better than ever. Because now she was ready to begin applying all the lessons she'd learned.
***
As payback for all the research that helped Jackson, Jamie began telling their family's story at 91ÊÓƵ fundraisers near their home in suburban Memphis.
Jackson's favorite part was getting to wear one of the red capes given to young "heart warriors."
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They've also started speaking about the mental health challenges of their journey. Jackson himself discussed it last year.
At the time, he was getting over yet another scare: nine months of intermittent symptoms that were finally resolved during a cardiac catheterization exam, when the doctor discovered – and corrected – a troublesome artery deep inside his heart.
Since then, his heart has been fine. The big question now is why Jackson – who is in fourth grade – has hardly gained any weight in about a year.
"Layne and I don't dwell on the fact that Jackson's life expectancy is shorter than Cooper's," she said.
Rather than being paralyzed by that, it spurs them into action.
They took a Make-a-Wish trip to Disney World. When they took a family vacation to Washington, D.C., they went via train. The boys' favorite destination is the beach in Pensacola, Florida.
Jamie gets joy from simply taking Jackson to the park to take pictures of dogs. Or driving to their favorite pizza place, singing along to songs by the band Imagine Dragons. Their favorite tune includes the lyrics: "Break me down and build me up. Whatever it takes."
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***
In January, Jamie and Layne were enjoying a date night when she somehow steered the conversation to the unanswerable question of whether the asthma medicine she took before knowing she was pregnant could've caused Jackson's heart problem.
"You've done so well for so long to not bring that up," Layne said.
"I can still wonder whether that could've been the cause," she said, "even though it wasn't my fault if that's what happened."
Layne smiled when she said, "It wasn't my fault."
Letting go of guilt was a tough but vital part of Jamie's healing.
So is nurturing the community of moms whose children have heart problems or other medical conditions. She's always available to provide information, inspiration or a shoulder to cry on.
The message she delivers most is about letting go of guilt.
"I have talked to a lot of 'heart moms' over the last 10 years and every single one of us has wondered what we did wrong to cause our baby's condition," she said. "I don't know that you ever really lose that."

Stories From the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.
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