Name: Kellie Moore

SADS Condition: LQTS Type 2

Tell me a little bit about your journey with pregnancy and SADS.

My daughter, Sophia, will be four in April. She was born in 2017. I really didn’t have any huge concerns going in. It was just very exciting. But of course, I wanted to be very careful and make sure that we were taking proper precautions as needed. And my OB-GYN was wonderful; he wanted to do extra ultrasounds. My cardiologist in Missouri actually wasn’t as involved in that pregnancy. But I was very confident with my OB-GYN. He said, continue taking your beta blocker all the way through.

Sophia was always on the smaller side growth-wise. Then I went in for my appointment at 37 weeks, and I had an ultrasound that day. And she hadn’t grown since the last, and the amniotic fluid was really low. And her heart rate was pretty low. And the blood flow in the umbilical cord was low.

My OB-GYN said, it’s just time for her to be born. He recommended an emergency C-section. It’s kind of funny, I went in for a routine appointment at nine that morning and then had a baby at 1:17 that afternoon.

Sofia’s blood sugar was on the low side. So she went to the NICU for that. A few days after she was born, they wanted to transfer her to St. Louis Children’s Hospital so that she could be seen by a pediatric electrophysiologist. She saw Dr. Aarti Dalal (I loved her).

We got to St. Louis Children’s Hospital on a Friday. They ordered her genetic testing, but then we didn’t get the results back until a couple of days later. They recommended we go ahead and get her started on beta blockers. And so when she was six days old, she started on propranolol. I’m actually really thankful that she started early because she just has always been used to taking it. She’s just always been used to taking a little bit of medicine every day.

She’s been a very healthy, very active girl. And we’ve never had any big concerns with her. I’m really thankful for my OB-GYN and the fact that he just wanted to be very watchful. Because I think if he hadn’t been ordering all those extra ultrasounds, we wouldn’t have been tracking everything so closely.

When I had my son, I was seeing a different OB-GYN, and she still wanted to do the extra ultrasounds. I also had a new cardiologist. And when I told him I was pregnant, he told me I should stop taking my beta blockers during pregnancy. And that just didn’t sit right with me. So I went and got a second opinion from another doctor and he was like, you should absolutely keep taking your beta blockers. It’s especially important in that postpartum time. So I was really glad that I had gotten that second opinion.

Besides that, my pregnancy with my son was pretty easy. I didn’t have bad morning sickness. He was a scheduled C-section. He doesn’t have Long QT syndrome. But he was born with an extra finger and toe on each end and each foot, so he had six fingers on each hand and six toes on each foot. Everybody has something that they’re dealing with. Sophia has Long QT syndrome. Henry has these little extra digits.

Everybody has imperfections, but it’s those things that make us unique, and help us have such powerful stories.

What was the most challenging aspect of being pregnant with a SADS condition?

I had morning sickness all the way through. The first trimester, I made it through without nausea medication. And then the second trimester rolled around, and I was like, I can’t do this anymore. The nurse called and she said, Okay, there are three options for anti-nausea medication. So I pulled up my Credible Meds app. And I looked and it was one of them was Zofran. And I was like, well, that’s no, and then I forget what the other one was, but it was also a no, and then finally, the third one worked.

What advice would you give to someone who’s pregnant and has a SADS condition?

I think one of my big pieces of advice is if you feel like you need a second opinion, absolutely get one, because you are your best advocate. And if anything just sounds off to you, be sure to go get a second opinion. The other piece of advice would be to, especially postpartum, practice self-care. I think it’s very easy to kind of get lost in taking care of the baby, but we also need to take care of ourselves, as every mom does, but I think especially when you’re at high risk postpartum, it’s especially important. For me, that meant slowing down from a lot of things and stepping back from a few things that I was doing during that time until I felt like I was ready to pick things back up again.

How has the SADS Foundation been helpful to you?

My mom connected with the SADS Foundation when I was a kid. For a few years, Dr. Vincent was our doctor. We’re just really grateful for the SADS Foundation for being a resource for support for us, and for knowledge. We’ve also been to a couple of the conferences, we went to the one in Chicago, and that was really neat. We helped with the youth and teen events. It was amazing just to meet other kids, other teenagers who had this condition. Because I think it can be very isolating, because a lot of people haven’t heard of it.

Rather than feeling touched by his words, I felt a little insulted. As an optimistic 18-year-old, I had never even considered the fact that someone might feel sorry for me because of Long QT Syndrome.

“Oh, don’t apologize for it,” I said. “It’s just something I live with.” I tried to explain that even though LQTS was important and serious, it wasn’t something I needed pity for. And I certainly didn’t want his pity.

Throughout my childhood, my parents helped me see the blessings and possibilities of life—not the limitations of LQTS. They raised me to live in hope and gratitude, not fear and self-pity.

Now, several years later, with a daughter of my own and a baby boy on the way, my mindset remains the same. Yes, it’s important to understand the seriousness of a LQTS diagnosis. But it’s equally important not to let that diagnosis rule my life.

I have a choice in how I live with this diagnosis. I choose hope and gratitude—and there is a lot to be grateful for. Here are just a few positive things that have come from living with LQTS.

I have a deep appreciation for life. Most days, I only think about LQTS for a few minutes when I take my beta blocker and give my daughter hers. Still, the knowledge of how serious this condition is and the dangers associated with it have helped me appreciate life at a deeper level than I would otherwise. I have learned to see every day as a gift.

I know how to be an advocate for my own health. I know how to say no to things that could be harmful, how to look up drugs on the CredibleMeds app, and how to explain Long QT Syndrome to friends and others I come into contact with. I also know that it’s important to find doctors I trust, and that it’s good to get a second opinion—especially if something doesn’t seem quite right. (If you need a new doctor, the SADS Foundation can help.)

I understand how to listen to my body. When I was a kid, my doctors recommended that I stay away from competitive sports. So instead, I took dance lessons, with the understanding that I needed to be careful and could take breaks if I needed to. I learned to be aware of my own physical boundaries and listen to them, rather than trying to push beyond them. My health is more important than the world’s expectations of me, and there’s a sense of confidence that comes from knowing I’m doing what’s right for me.  

I have a big reason to prioritize self-care. Self-care is important for everyone, but it’s so easy to let the busyness of life get in the way. Having LQTS has helped me prioritize my well-being—especially after having a baby. For women with LQTS Type 2, the postpartum phase can be a high-risk time. Keeping that knowledge in the back of my mind helps me slow down and be gentle with myself.

I have a strong sense of self. I’m not “the woman with the heart condition.” My identity comes from so much more than this one aspect of my life. I am a wife, mother, a sister, a daughter, a friend. I write, I bake, and I craft. It would be a shame to let LQTS be the defining factor of my identity.  For me, Psalm 139:14 has been a guiding verse: “I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well” (NIV).

My heart doesn’t work the way most people’s do, but I don’t see that as a mistake, because living with LQTS has taught me so much.

When life becomes a blur of sleepless nights, round-the-clock feedings, diaper changes, and newborn snuggles, it’s easy to put aside self-care and focus all of our energy on the new baby. While it might seem noble to sacrifice our own well-being, it’s not healthy for anyone—and those of us with Long QT Syndrome need some extra gentleness and care.  

If you’re having a baby and you have LQTS, here’s what you need to know about the postpartum phase.

What the Research Says

According to the Mayo Clinic, “Pregnancy and delivery aren’t associated with an increased risk of symptoms in women with Long QT Syndrome.” But after the baby is born, that changes—the risk goes up, especially for women with LQT2. There’s research to back this up.   

One study focused on the “genetic underpinnings” of cardiac events during the first 20 weeks postpartum. Researchers found that women with LQT2 were at a higher risk than women with other types of LQTS.

Another study compared the likelihood of having a cardiac event in the nine months before, during, and after pregnancy. The results showed that the risk of having a cardiac event during pregnancy was actually lower than it was before pregnancy. But in the nine months postpartum, the risk was higher than before. During the first six months, in particular, the data showed “a meaningful increase in the probability of a first cardiac event.”

As with the other study, women with LQT2 had more cardiac events than women with LQT1 or LQT3.  Importantly, the researchers noted that beta blockers “significantly reduced” the risk of having a cardiac event.

Even so, beta blockers are no guarantee. A different study analyzed the cases of two women with LQT2. Both were on beta blockers, and both had cardiac events in the months following childbirth—one 4 weeks after delivery, and one 8 weeks after delivery. But the researchers said beta blockers should certainly be continued, along with close monitoring.

It’s also important to note that not every woman with LQT2 in the studies had a cardiac episode. Some women go through the postpartum phase without any problems.

What You Can Do

Because of the increased risk, the Mayo Clinic says women “need careful monitoring” during the postpartum phase. Stay in communication with your care team, including your OB/GYN, electrophysiologist, and any other providers you see regularly.

Along with receiving proper medical care, you’ll also need to prioritize self-care at home. The SADS Foundation has several self-care suggestions for the first 40 weeks postpartum.

Some of the recommendations are part of routine LQTS care: Take all prescribed medications, and stay away from those on the Drugs to Avoid list. The CredibleMeds app is a useful resource, especially when searching for over-the-counter medications that are safe.

It’s also important to maintain a healthy diet. A key part of that is eating potassium-rich foods. While bananas might be the first thing that comes to mind, there are several other options that have even more potassium, such as sweet potatoes, yogurt, and butternut squash.

Adding omega-3s to your diet can also be helpful. You can find them in flaxseed oil, canola oil, and soybean oil. A few other sources include chia seeds, salmon, mackerel, walnuts, and spinach.

It’s best to avoid green tea and grapefruit. According to the SADS Foundation, in high amounts, they can prevent one of the heart’s ion channels from functioning properly. It’s also good idea to reduce sugar and avoid caffeine and alcohol—so ignore all the memes and jokes about surviving on coffee and needing a glass of wine.

These next recommendations might sound impossible with a newborn: Rest as much as you can, and keep your stress levels as low as possible. As difficult as they may sound, they are important, and there are steps you can take to make them a reality—you might even consider making a “postpartum sanctuary plan.”

You’ve probably heard the advice, “Sleep when the baby sleeps.” Do it—your body needs the rest. This is not the time to be “Supermom,” or to “bounce back.” It’s a time to slow down, ask for help, and lean on your family and friends. Give yourself permission to rest. If that’s hard for you, remind yourself that it’s for the good of your heart, and ultimately, for the good of your baby. Rest as if it’s your job. And while you’re at it, keep alarm clocks, phones, and other startling noises away from your resting spot.

Look for ways to cut out sources of stress. That might mean saying no to outside commitments, limiting visitors, or cutting back on social media. For me, it meant stepping away from the workforce to become a stay-at-home mom—I knew that trying to “have it all” would be too much for me to manage.

For the stress you can’t eliminate, take some time to figure out a healthy form of stress relief that works for you. After my daughter was born, I made it a priority to take a shower every night. It was so simple, but it helped me decompress after a long day, and it served as a soothing transition to the night ahead. Getting fresh air and doing yoga also helped. If your stress relief comes in the form of exercise, be extra careful with it.

If you receive treatment for postpartum depression, work with your care team to make sure your medications are safe for Long QT Syndrome.

You can find the full list of postpartum guidelines, along with other helpful information on pregnancy and LQTS, using this link.

That’s me, hooked up to a Holter monitor after my most recent cardiology appointment!

What’s your diagnosis story? How did you find out you have this condition?

We first found out about Long QT Syndrome because my grandma had a couple cardiac episodes. My mom and I were then also diagnosed. I was around 5 years old, and I don’t remember being scared in any way—it was just part of life. When I was a little older, we got genetic testing done, and that confirmed the diagnosis.

What has been the biggest challenge you’ve faced in living with your diagnosis?

Because LQTS has been part of my life since I was a child, it’s always felt “normal” to me. However, I did face one big challenge in high school P.E. My doctor wanted me to be excused from P.E. class, but the principal wouldn’t allow it. I took the class with the understanding that I needed to listen to my body. I lived an active life, but I also knew my limits. When the class did the timed mile, I didn’t feel comfortable pushing myself to the degree that other students did, so I didn’t make it in the time we were supposed to aim for. Because of that, my grade dropped. So, my mom and I took action. We worked to get the P.E. grading policy changed to Pass/Fail instead of a letter grade. The school also created a new class, Adaptive P.E., so people could work within the physical boundaries that were best for them individually. What started as a frustrating challenge led to an empowering change.

What is one positive thing that has come out of your diagnosis?

I’ve learned a lot about being secure in who I am—Long QT Syndrome is part of me, but it does not define me. I’ve also learned to appreciate life more fully.

What encouragement or advice would you give to someone who has just been diagnosed with your condition?

First, know that LQTS is not a death sentence—you can still live a full, beautiful life. I find that it’s helpful to have a go-to explanation of LQTS. That way, when I’m in a situation where I need to talk about it with others, I can do so with ease and confidence. Own it!

What does your day-to-day life look like? 

I’m a stay-at-home mom with a 1-year-old daughter and another baby on the way. (My daughter also has Long QT Syndrome.) We go for lots of walks in the park, and we enjoy going to events at our local library. I do a lot of cooking and baking, as well as other projects around the house. Outside of family, my biggest passion is writing, so I try to fit that in whenever I can—including writing for the SADS Channel!

What are your favorite hobbies and activities?

Writing, reading, baking, scrapbooking, yoga

Want to be featured in the SADS Spotlight? Share your story by answering a few short questions. If you have a longer story to tell, or if you’d like to write about a specific topic, check out our guidelines for writers. 

Timothy Syndrome is a rare form of Long QT Syndrome that comes with several possible complications: webbed hands and feet, developmental delays, structural problems with the heart, dental problems, gastrointestinal issues, and a weakened immune system, among others. There’s no definitive count of how many people have the condition, but the estimate is somewhere between 30 and 50 people worldwide. Because Timothy Syndrome is so rare, research is sorely lacking.

Mary Ann’s son, Lee, had this condition. He was diagnosed when he was 1 year old. When he was 5, he passed away after hypoglycemic seizures—a complication he faced as a result of Timothy Syndrome. Just a month before he died, Lee dressed as Superman for Halloween, and so did the rest of the family. He earned the nickname “SuperLee,” and it stuck. He left a Super legacy behind.

The milk-and-cookies fundraiser is one part of that legacy. The family held the first fundraiser in 2011, the year Lee was diagnosed. After several long, difficult months, they wanted to throw a party to thank everyone for their support and raise awareness about Timothy Syndrome. They also wanted to raise some money for the SADS Foundation, specifically for Timothy Syndrome support and research.

The party was simple. It was an open house, so people could come and go as they pleased. Guests munched on cookies and milk, and the Ciciarellis gave out information on Timothy Syndrome. No one was required to donation, but everyone was encouraged to. The amount didn’t matter—every dollar mattered. By the end of the party, thanks to their roughly 100 guests, the Ciciarellis had raised about $15,000. Mary Ann worked with the SADS Foundation to set up a special fund for Timothy Syndrome.

That party has since become a tradition. Old friends of Lee’s still stop by with their parents, and Mary Ann is grateful to them for helping keep Lee’s memory alive.

Since the event is held around the holidays, the Ciciarellis give their guests a special Christmas ornament to remember the event and the cause.

The community has stepped up to offer support. Friends have helped by donating cookies and milk, and local bakeries also help out with donations. For the most recent party, a company donated a bounce house, and a local singer/songwriter gave a few hours of performance time.

Mary Ann also became part of a larger effort. In August 2015, just a few months before Lee’s death, she was one of three women who founded the Timothy Syndrome Alliance, or TSA. Another founder, Courtney Waller, has a daughter with Timothy Syndrome. Courtney’s daughter was featured in a CBS story about children with rare diseases.

The other founder is Katherine Timothy of the SADS Foundation—the person Timothy Syndrome is named after. She spent a lot of time following the kids who turned out to have this condition.

But there are still a lot of unknowns about Timothy Syndrome. That’s where the TSA comes in—one of its goals is to be a source for funding research. The alliance hopes to partner with a major medical facility in the near future.

One key aspect of Timothy Syndrome that needs to be researched is the life expectancy of people who have it. Many people with the condition die during childhood, but there is a 27-year-old woman still living with it.

The alliance also exists to be a resource for families. The TSA has connected with Timothy Syndrome families in different parts of the world, including Norway, New Zealand, and Hong Kong. And some of the money raised for the TSA goes toward scholarships for families to attend the SADS Conference, where they can connect with other families in person.

As for Mary Ann, supporting Timothy Syndrome families and searching for answers has become her life’s work. “I can’t help Lee anymore,” she said. “But I can help other kids like Lee.”

What you can do

If you would like to make a donation to the Timothy Syndrome Alliance, click here. 

If you are interested in holding a fundraiser for Timothy Syndrome, contact Mary Ann at tsaciciarelli@gmail.com.

You can also follow the Timothy Syndrome Alliance on Twitter.

Natalie Moye and her family.

She was 26, and she had just given birth to her first child, Elliot, 8 weeks earlier. She wanted to lose the baby weight, so she decided to join a weight loss and healthy lifestyle program. Before she could begin, she needed to get some routine blood work and an EKG.

But after the doctor reviewed her EKG, he looked concerned. He asked Natalie if she had ever had an EKG before. As far as she could remember, she had never needed one. She had always been healthy—she even played sports back in high school.

The doctor told Natalie something was abnormal: Her QT interval was prolonged. The doctor said it could be the result of some medicine Natalie was taking, but just to be safe, he made an appointment for her to see a cardiologist the following week.

Seeking Answers

The news at the cardiologist’s office was no better—Natalie’s QT interval was even longer. The cardiologist said Natalie could have Long QT Syndrome. Natalie had never heard of it, and she had no idea what it meant.

The cardiologist asked if she had ever fainted suddenly. She never had.

Then, he asked whether anyone in the family had died suddenly, and seemingly without explanation.

The answer was yes. When Natalie was 2 years old, her 23-year-old aunt died unexpectedly. The aunt had been on a ketogenic diet, and her potassium levels bottomed out. Ultimately, that was the believed cause of death.

When Natalie told the story, the cardiologist grew more concerned—and he was even more convinced she had Long QT Syndrome. From the look on his face, Natalie could tell this was serious.

“He scared me at that first appointment,” she said. Afraid and overwhelmed, she started sobbing. On top of caring for a newborn and managing postpartum emotions, now she was dealing with a potential life-changing diagnosis that could be connected to the death of her aunt.

The cardiologist said Natalie needed genetic testing, and she left with a prescription for a beta blocker. She was so distraught, she couldn’t drive home.

She wanted to get a second opinion. Her mom worked for a different cardiologist, and Natalie got an appointment with him the next day.

Sure enough, her QT interval was still long—530, to be exact. The doctor wanted more information. Right then and there, he did an EKG on Natalie’s mom. Her QT interval was also long.

“We were just all kind of blown away,” Natalie said.

She also learned she would need to get her baby boy tested. The weeks of waiting for his test results gave her a lot of anxiety—so much that she and her husband debated whether to have more children.

Finally, little Elliot’s results came back. He had Long QT Syndrome, too.

“I just had this feeling, ‘We’re all about to die,’” Natalie said.

But at the same time, she was thankful to know about the condition. If it hadn’t been for that first doctor who paid close attention to her EKG, they might never have been diagnosed. Natalie wrote him a letter, thanking him for potentially saving a life.

Natalie shared the diagnosis with her family members so they could be informed, too. Some chose to get tested, while others did not.

Living with LQTS

As she grappled with her new diagnosis, Natalie looked for support. She found it through Facebook groups: Long QT Syndrome Support and Learning Community and Living with an ICD.

It helped Natalie to hear from others who have Long QT Syndrome—and who were raising young kids with it.

“They had already been through the trenches,” she said.

The week of Elliot’s third birthday, Natalie went through a trench of her own. Elliot had a stomach bug and couldn’t keep anything down, so he ended up in the ICU. For a few seconds, the monitor showed he had a short run of torsade de pointes—a type of arrhythmia. The medical team rushed to his side. It was so brief, he didn’t faint. Thankfully, that’s the only scare they’ve had.

Now, Elliot is 4 years old, and he takes a beta blocker twice a day. Natalie sends an AED to school with him because “his heart is special like Mommy’s.” But that’s the extent of his knowledge for now, and Natalie wants him to live a full, normal life. He plays soccer, and he loves playing trains and riding his bike. 

Natalie and her husband also have another child now—a 1-year-old girl named Camille. They had her tested as soon as she was born, and she doesn’t have Long QT Syndrome.

Not a day goes by that Natalie doesn’t think about Long QT Syndrome. But now that she’s done some research on the condition, she feels less anxious and more confident.

Getting the Right Treatment

She is also confident in her treatment. Shortly after her diagnosis, her cardiologist told her she needed an ICD. Just as before, Natalie wanted a second opinion. She got the same answer: She needed an ICD.

But getting an ICD was a big decision, and she wanted to feel completely comfortable. So her family traveled from their home in Alabama to the Mayo Clinic in Minnesota. There, Natalie saw Dr. Michael Ackerman, a leading expert on Long QT Syndrome.

During the visit, they determined that getting an ICD would indeed be the best treatment for Natalie’s situation. That gave Natalie the certainty she needed to move forward. Her ICD is in a unique spot—it’s in her abdomen, with epicardial leads. This placement made the most sense for her. Even though she still ended up with an ICD, she’s glad she didn’t just go with the first doctor’s recommendation.

Through her experiences, Natalie has learned the importance of advocating for her health, and she encourages others to do the same. Even if later doctors only confirm what the first one said, those extra opinions provide peace of mind—and that peace makes a big difference.

If you would like to share your story with SADS Channel, contact us at SADSblog@sads.org!   

For us, Long QT Syndrome is a normal part of life. So as my husband and I anticipated our daughter’s birth, I wondered about her heart the same way I wondered about the color of her hair and eyes.

My daughter was born via C-section at 37 weeks. A few hours after birth, she had to go to the NICU for low blood sugar. When the NICU doctor learned about my family history of Long QT Syndrome, she wanted to get our baby checked as soon as possible. At five days old, she was transferred to a different hospital in a larger city for testing and possible treatment.

There, her new doctor ordered genetic testing. But it was a Friday night, and they wouldn’t be able to draw blood and send it off until Monday. Then, we’d have to wait weeks for the results.

Based on our daughter’s EKGs and my family history, the doctor wanted to treat her as if she had Long QT Syndrome. That meant starting her on Propranolol. The doctor assured us that giving our baby a beta blocker wouldn’t hurt her in any way, even if it turned out she didn’t need it. From the doctor’s perspective, it was better to err on the side of caution. My husband and I completely agreed.

I knew that if our daughter was taking the beta blocker, I would have peace of mind while we waited for her test results. If she wasn’t taking it, I would worry that we were putting her at risk.

I also knew from experience that starting beta blockers at a young age was nothing to be afraid of. My sister and I were taking beta blockers by the time we were 3 and 10 years old. My brother started taking his even earlier, when he was still a baby. Taking beta blockers fits as naturally into our daily routines as eating breakfast and brushing our teeth. And we’ve all grown up to live happy, healthy lives.

So when our daughter got her first dose of Propranolol, I had no misgivings. I trusted her team of specialists, and I wanted to make sure we were doing all we could to protect her tender little heart. My biggest worry was that she wouldn’t like the taste—after all, I’d have to give it to her multiple times a day. To my surprise, she loved it. In this big world that was still so new to her, it blended in as just one more new thing. Her nurses kept close watch over her, checking to make sure she adjusted well.

When she was one week old, after some final health checks and a blood draw for the genetic testing, we got to take our baby home. We learned several weeks later that starting her on a beta blocker was the right move—her test results came back positive. She has Long QT Type 2, like I do.

Taking Propranolol hasn’t had any negative effects on her life. She’s doing all the things a normal 8-month-old does: gaining weight, eating well, sleeping, babbling, playing. Just watching her, you’d never know she has a serious heart condition.

Because she started taking her beta blocker before we even brought her home, it has always been part of our childcare routine. She’s our first child, so as parents, we don’t know anything different. It’s normal for us.

That doesn’t mean it’s without the occasional challenge. I’m pretty sure our daughter would sleep for 12 hours straight if we let her, but right now, she has to take her medicine every eight hours. Every night, I have to pull myself out of bed to wake a sleeping baby. But I know it’s for her benefit. I also know this phase is temporary—when she’s big enough, she’ll switch to a different beta blocker with a once-a-day dose. She’ll be able to sleep as long as she wants, with no interruptions.

It has also taken time to find a medicine routine that works for us. With the doctor’s permission, we’ve adjusted which times of day we give our daughter her beta blocker. (Talk to your doctor for guidance.) Right now, we do one dose during the bedtime routine, one overnight, and one mid-morning. That way, there’s only one time of day when we might be out of the house and need to bring her medicine with us.

Having a baby on long-term prescription medicine might seem overwhelming, but it doesn’t have to be scary or negative. Sometimes, it’s simply a necessary part of life. People often associate medicine with sickness. But I do not have a sick baby. Yes, my daughter has a heart condition, but she is healthy and strong, and her life will not be any less fulfilling than I dreamed it would be.