Celebrating our SADS Dads

Can you tell me a little bit about your family’s SADS journey?

My wife, Cynthia, died suddenly at the age of 38 after collapsing at work and becoming nonresponsive. She died three days later. We had two daughter, ages three (Julia) and four (Miranda). The doctors who were treating Cynthia quickly came to the conclusion that she had likely suffered a cardiac arrhythmia disorder, and they suspected LQTS. They later did genetic testing based on a blood sample that she’d done before she passed away, and they determined that she did have markers for LQTS Type 1. Subsequently, we tested both daughters. Miranda tested positive for LQTS; her sister tested negative. Since Miranda was four, we’ve treated her with beta blockers; she’s on a daily Nadolol regimen. She’s been asymptomatic her whole life with no apparent side effects or problems.

Are there any unique challenges of being a SADS dad?

I’ve always been concerned about, and watchful for, psychological effects. They never really materialized – Miranda is thriving. But there’s always been a cloud because of her mother’s death. I understand that her risk of becoming symptomatic and having an attack is no higher than it would be for any other LQTS child. She’s effectively treated and can look forward to a long and normal life, but you always have that sense of anxiety hanging over you.

There are things you have to do continuously as an LQTS parent – for camps, sports, and schools – to make sure that the folks who supervise your child are aware of your child’s condition and have a plan in place in case of emergency. That’s an extra set of responsibilities LQTS parents deal with.

What words of encouragement would you give to other SADS dads?

For most of these conditions, there are very effective medications and management strategies.  I think the key is to do what you need to do for your child, but then get out of the way and let them live their life. SADS kids should not only live normal lives, but also thrive.

How has the SADS Foundation been helpful to you and your family?

I became involved with SADS after meeting Dr. Vincent, who was the personal physician for a law partner who serendipitously also served on the SADS board at that time. After using SADS as resource to figure out how to get the diagnosis and care we needed for our daughters, I wanted to get involved and assist other families and patients who were dealing with SADS conditions. I joined the board in 2007.

I learned everything about LQTS through contacts with SADS, and the education was invaluable. SADS guided us to genetic testing resources to make a diagnosis. I’ve also attended conferences and met other families – and helped them understand the need for genetic testing, and offered them encouragement and support. That’s been a real privilege.

Can you tell me a little bit about your family’s SADS journey?

Our oldest daughter, Annie, was born in 1996. At the age of seven or eight, one of her doctors pointed out that her QT interval did not increase with exercise. When she was ten, she was swimming at a YMCA when she had a cardiac arrest. Thankfully, she survived – she was revived by a lifeguard on duty. From there, we had genetic testing, and she was positive for LQTS Type 1. She was the first in the family to be identified. We established a relationship with Alice at the SADS Foundation via phone and email, and she encouraged us to let our family know – and it turns out that my wife, her two sisters, and one of their children have LQTS as well. Thanks to Annie, others are now more aware and taking precautions.

Are there any unique challenges of being a SADS dad?

With Annie, she was very active and on a travel soccer team. We made the decision to pull her from the team after her diagnosis. We had the challenge of helping Annie to thrive in life, stay positive, and stay focused on the things she could do. You want to guide your kids to explore, try new things, and focus on what they can rather than can’t do.

What words of encouragement would you give to other SADS dads?

There’s so much information out there – and thanks to the SADS Foundation for leading the change. I’d encourage other parents and dads to get informed and stay informed, reach out to others, and go to SADS conferences. Conferences are helpful because of the wealth of information, and because you can meet other families with similar stories. Seek information and knowledge, and don’t be shy.

How has the SADS Foundation been helpful to you and your family?

The SADS Foundation is our rock – Alice in particular has been so helpful and supportive of our journey throughout the years. The SADS Foundation has been a source of information, comfort, support, and the gateway that has provided us the opportunity to meet other families who share our journey – we’ve gone to about six conferences in person. We’re very thankful for the SADS Foundation.

Phil Howard

 

Can you tell me a little bit about your family’s SADS journey?

Our situation was unique. It could have turned out horribly, but we were lucky. My daughter went into cardiac arrest at a young age, and survived due to quick thinking and luck. Being a dad has been a blessing. This situation put a different perspective on life – how special it is, and how important it is to enjoy every single moment of it. The SADS Foundation was really there for us. I made a promise to myself that I would give back, which is why I became involved with the board.

Are there any unique challenges of being a SADS dad?

The uncertainty is a challenge, and balancing your child’s experience in life. Dealing with their condition is a challenge too – making it something not to be worried about, but recognizing that it’s there.  

What words of encouragement would you give to other SADS dads?

Knowledge is power – the more you can learn, and get information, the more peace of mind you’ll have and you’ll worry less. Science has come so far, and the ability to treat and deal with these conditions is better than ever. It’s a different world now than it was even five years ago, and it’s only going to get better. While this is a challenging thing to go through, I’m pretty optimistic about the long term for my child’s life, and what it will be like in the future.

How has the SADS Foundation been helpful to you and your family?

When my child was two, she was nursing on Father’s Day – six years ago – and she went into cardiac arrest. We called 911, and did CPR. Her heart stopped. The paramedics shocked her and got her to Stanford, where she spent 11 days in the ICU and eventually had an ICD implanted – that was the darkest period of my life.

The SADS Foundation stepped up and the community care person called to ask how we were doing. They got us in touch with another family to help us understanding how they were dealing with things, and were able to give us practical, tactical advice on what to do next.