Grief and Loss | SADS Foundation Blog http://www.sads.org/blog Supporting Families. Saving Lives. Tue, 26 Apr 2022 22:25:09 +0000 en-US hourly 1 https://wordpress.org/?v=5.1.13 The Jones Family’s Story http://www.sads.org/blog/2022/03/25/the-jones-familys-story/ http://www.sads.org/blog/2022/03/25/the-jones-familys-story/#respond Fri, 25 Mar 2022 15:13:49 +0000 http://www.sads.org/blog/?p=1590

“We celebrate Graeme every day in our family by persevering and sticking together, against all odds.”

Deby’s Story

I was 28 when I was diagnosed with LQTS in 1989. In 2000, we learned from my Electrophysiologist, Dr. Blair Halperin that we could do genetic testing for my children through Dr. Michael Ackerman with the Mayo Clinic. It was very complicated at that time, and costly. And just one month after we initiated genetic testing, my son, Graeme, died at 12 years old after jumping into a pool and experiencing a Sudden Cardiac Arrest. We were heartbroken.

Dr. Ackerman got very involved in our story and immediately got in touch with our family to see if we wanted to test our other two children. They were able to determine that Graeme had LQTS, as well as my daughter Marissa. My oldest son did not. We became very involved with the SADS Foundation, especially around the issue of defibrillator access. At that time, defibrillators were seen as something that could hurt someone, as opposed to helping them. We advocated around the Portland area and throughout the state of Oregon for AED use in public places. At that time, AED access was nonexistent except in healthcare settings or with EMS staff or police officers. The SADS Foundation was really part and parcel of spreading the message that AEDs are lifesaving devices –like fire extinguishers. It was an uphill battle. The school district officials would NOT let us put one at Marissa’s elementary school because they thought that the Good Samaritan Law wouldn’t cover liability if someone was inadvertently shocked, which could not happen with these devices.

It’s easy to feel paralyzed by this kind of diagnosis. You can’t see it, you can’t look at it, and you can’t tell someone has it by looking at them. If you’ve just been diagnosed, read as much as you can, and go to SADS.org to educate yourself so you can find the right medications and care. And please get treated as soon as you can, whether it’s through medication or an ICD. ICDs do feel terrible when they fire, and can be scary, but they save lives.

It’s so hard to lose a child, and that pain never goes away. The best thing we could do to honor Graeme was to persevere as a family, and come together to advocate. My parents just passed away, and the SADS Foundation was important to them as they knew it as a great tool for families living with or new to LQTS. Their donation to SADS was such a wonderful way to share their care and concern for all families living with life threatening arrhythmias. The SADS Foundation has been helpful in helping us know what drugs we can take, and which we should avoid, with LQTS. They’ve helped us in spreading awareness and understanding. If my husband and I couldn’t explain something, or answer a question, we’d always point to the SADS website as a great resource!

We have a little baby who’s just joined our life – my granddaughter. And there’s so much less fear attached to LQTS for her. There’s been so much progress, thanks to organizations like the SADS Foundation.

“LQTS doesn’t define me, but I do need to be aware of it – take ownership of that part of myself, take my medication, and educate others.”

Marissa’s Story

Right after my mom had my brother, she found out she had LQTS. That was about 30 years ago – and not much was known about it at the time. Growing up, we went through testing and EKGs, but weren’t diagnosed. After my brother passed away at the age of 12, we went through early genetic testing, and I learned that me and my brother, Graeme, who passed away, had LQTS. My older brother does not.

Once my family found out I had LQTS, it was a race to figure out how to manage it, especially since there was a lot that wasn’t known. My parents found the SADS Foundation, and that was the beginning of them learning about this condition. I was really into sports at the time – soccer and gymnastics – and my parents said that I wouldn’t be able to continue playing, and that we’d need to pivot, adjust, and find something else for me to focus on. That was really difficult for me, but my parents were amazing at saying, okay, sports are a “no”, but look at all these other things that are a “yes”!

Our beautiful baby girl, Saylor, was born three weeks ago and has LQTS. Pregnancy was challenging with LQTS – they wanted to take me off my beta blocker, but I knew that my cardiologist would say “no way,” and that I needed to be a healthy mom to have a healthy baby.

I stayed on my beta blocker, and they put me with a high-risk pregnancy doctor just to be safe. There was pushback throughout, and the biggest challenge for both me and my husband was advocating for ourselves and our baby, and feeling heard. Talking about LQTS was a constant conversation we had with our doctors. That’s the biggest piece of advice I have for other pregnant moms with a SADS condition – advocate for yourself and your baby, communicate how you’re feeling and what you know about your condition, connect your doctors with each other, and have a plan for post-delivery if needed.

Losing my brother, and seeing my mom have multiple cardiac arrests, I knew I needed to respect that part of me. LQTS doesn’t define me, but I do need to be aware of it – take ownership of that part of myself, take my medication, and educate others. If you have LQTS, I just want to say: take your medication, listen to your doctors, because you being here is so important.

We just got back last week from an appointment with my childhood pediatric electrophysiologist, who’s now Saylor’s pediatric electrophysiologist. Things have changed so much – she can play soccer and do sports.  I felt hopeful coming out of that. If we knew back then what we know today about LQTS, we might have been able to save my brother.

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Sandy’s Story: Media Volunteer Spotlight http://www.sads.org/blog/2022/03/10/sandys-story-media-volunteer-spotlight/ http://www.sads.org/blog/2022/03/10/sandys-story-media-volunteer-spotlight/#respond Thu, 10 Mar 2022 17:46:01 +0000 http://www.sads.org/blog/?p=1585

This Heart Month, volunteer Sandy Cowin made a huge impact through sharing her story with her local news station, Spectrum News 1, which broadcast her story and the SADS warning signs across the state of New York, and writing an article for her Employee Assistance Program newsletter, which was distributed across the State University of New York System Offices.

“I’m starting to get comfortable with sharing my story,” she says. “I’m happy to finally start contributing to awareness in my community and now I don’t want to stop!”

Her father passed away suddenly from cardiac arrest in 2009 as a result of Brugada Syndrome at the age of 65. “As anyone who loses someone suddenly knows, it’s really shocking,” she says. “He led a very healthy and active life until he died suddenly and unexpectedly, although there were warning signs for many years, including fainting during a fever.”

Sandy and her siblings were then tested for Brugada Syndrome, but their initial test came back inconclusive. Seven years later, Sandy retested as part of a clinical trial at NYU Langone Health and tested positive through a flecainide infusion.  

Her son, Jackson, a high school senior, is closely monitored as well. He’s an active runner who participates in both cross-country and track. “We are under the care of great doctors and have no restrictions on physical activity,” she says. “There are many preventative measures we can take to limit the chance of a cardiac event.”

Sandy wants to spread awareness of the warning signs – to make sure that people get proper treatment and get diagnosed early. “Don’t put symptoms aside,” she says, “because sometimes the first sign could be a cardiac arrest. I am very thankful for my diagnosis so that we get the treatment to ensure a long and healthy life.”

If you’re interested in becoming a media volunteer like Sandy, click here to get started.

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In Memory of Brian Peck http://www.sads.org/blog/2022/03/07/in-memory-of-brian-peck/ http://www.sads.org/blog/2022/03/07/in-memory-of-brian-peck/#respond Mon, 07 Mar 2022 18:13:14 +0000 http://www.sads.org/blog/?p=1581

Brian was a junior and on the dean’s honor list at the University of Wisconsin-Madison, studying biomedical engineering and computer science. He truly loved his college experience and formed an amazing second family away from home. We are comforted knowing he was the happiest he’d ever been especially after recently landing an internship as a biomedical engineering intern at Medtronic in the cardiac rhythm and heart failure division of all places.

Just a normal day in the life of a college student during exam week, Brian was in his apartment all day studying on and off for a test. He had been complaining of what he thought was an abscessed tooth for a day and a half. He still had one more final exam, but it became very painful. He called home complaining it was getting worse which was unusual for Brian.

I called his doctor to get him an antibiotic to help until he got home. They rightfully refused as he was too far away to be evaluated. I then urged Brian to go to the immediate care, but he thought it could wait. I also urged him to call his doctor which he did as we noticed that they were his last three phone calls.

Brian’s roommate was studying in the next room and after we contacted him, he went to check on Brian and found him sitting up in his chair, already gone. It had been a couple hours since he was last seen acting normally. We were told nothing was found wrong with the tooth or with Brian. We now suspect it was a sudden cardiac arrest.

Brian’s goal was to find a career “ to improve the quality of life for others”. He always listened to others and made them feel like they mattered. We miss him so much and think about him every day. Brian was brilliant, humble, and kind. He made a great impact on many lives. It’s still hard to believe he’s not going to walk through the door from school with a big smile on his face, dragging in his pile of dirty laundry. He always ended the day saying or texting  “I love you”. The summer before his death, we had secretly recorded Brian playing Pearl Jam’s “Just Breathe” on the guitar – it has become our motto for moving forward.

We are so grateful for the help we received from the SADS Foundation. They were here for us to guide us on our journey. They were our lifeline, helping us navigate next steps for evaluating Brian’s younger brother. They continue to support us through informative e-newsletters, educational family webinars, and the virtual family conference where we connect with world experts and other SADS families. We ask that in memory of Brian, you please take a moment to donate to the SADS Foundation.

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In Memory of Sonny Jude: Sam’s Story http://www.sads.org/blog/2022/03/02/in-memory-of-sonny-jude-sams-story/ http://www.sads.org/blog/2022/03/02/in-memory-of-sonny-jude-sams-story/#respond Wed, 02 Mar 2022 16:34:35 +0000 http://www.sads.org/blog/?p=1574
Lyla, Sonny Jude’s sister, at the pancake breakfast

My son, Sonny Jude, went unresponsive (stopped breathing and his precious heart stopped beating) at six months old.  His babysitter saw this and performed CPR and resuscitated him.  It was then we learned that Sonny Jude has LQTS (Long QT Syndrome).  In October 2022, when he was 13 months old, I put him down for a nap and he didn’t wake up.

My baby boy, Sonny Jude was the most loving, sweet, bright soul I’ve ever known.  In his short life, he made such an impact on everyone who had the honor of knowing him.  His smile would light up a room, he only ever knew love and happiness.  He loved waving to everyone. He loved laughing, smiling, playing, being outside, swinging, playing in the splash pad, snuggling, climbing stairs, his dogs, Paw Patrol, Bluey, french fries, and most importantly being around the people he loved. Sonny Jude especially loved his big sister Lyla, they were the best of friends, he loved learning from her and playing with his big sister.  His first word was “Lyla” or as he said “Wy-wa.”

My favorite memory of Sonny Jude is actually the whole summer before he passed.  We spent nearly every day at his grandparent’s house, playing on the splash pad or in their little pool with his big sister, Lyla.  Splashing in the water, sitting on the swing with us, lounging on the lawn, plucking blades of grass and offering them to us or the dogs, and always waving ‘hi’ to everyone for every occasion.

I’m trying to transition my grief and devastation into something positive.  Sonny Jude was a happy boy, and I want to put some of that positive and loving energy back into my community to bring awareness to arrhythmias, and how important learning CPR is. 

Sonny was always up early and loved pancakes, so it seemed right for our first fundraiser to be a Pancake Breakfast on February 19, 2022.  We wanted to raise funds and awareness for the SADS Foundation, and put fliers out at Lyla’s school, dance studio, and the local YMCA.

February 19th I held my first fundraiser, the first I’ve ever done. The SADS Foundation is specific to what my little Sonny Jude had, and they’ve been so helpful in assisting me with fundraising.

CPR is so important.  A 16 year old babysitter that had taken CPR revived Sonny In March 2021.  It doesn’t matter how old you are when learning CPR, as every second counts when you can save a life.

My goal with the Sonny Jude Foundation is to educate the general public about heart arrhythmia syndromes, bring awareness to the importance of CPR and to bring joy to others through a variety of fundraisers, projects, volunteer work and also through random acts of kindness, specifically with our “Have a Sonny Day” project. I look forward to making our Pancake Breakfast Fundraiser annual, and look forward to continuing working with SADS.

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SADS Spotlight: Alan London http://www.sads.org/blog/2022/01/11/sads-spotlight-alan-london/ http://www.sads.org/blog/2022/01/11/sads-spotlight-alan-london/#respond Tue, 11 Jan 2022 18:25:04 +0000 http://www.sads.org/blog/?p=1555

In 1997, my wife and I had three kids. Our son Michael, who was eleven, had fainted twice. The first time, it was explained away by the E.R. and his pediatrician as a vasovagal episode from unusual activities. The second time, he got an EKG and was examined by a neurologist and cardiologist. Nobody ever mentioned Long QT, and he was given a clean bill of health.

In June of 1997, we went on a family vacation to Israel. My oldest son was turning 13, and it was his Bar Mitzvah. With a group from our synagogue, we toured the country. On the day of his Bar Mitzvah, we went into the desert. It had been a very long and hot day, and we had a swimming pool party that night. Michael and his sister were swimming – they were holding their breath and doing laps underwater – when Michael became unresponsive. My wife jumped in the pool, and we did CPR by the side of the pool for 40 minutes or so. There was no 911 available – we were in the middle of the desert – and there was no defibrillator, which we found out later was what we needed. 45 minutes later, an Israeli helicopter with a medical unit arrived. They tried to revive him but couldn’t. He passed away in our arms, with his brother and sister watching. It was very traumatic.

It never sat right with me that the cause of death listed on the death certificate was drowning. Michael was a healthy eleven-year-old – he was very athletic; he could run and play for hours. The only concern we had was that he’d fainted twice. About six months after he’d passed away, I was going through some paperwork and came across medical files from several years before when he’d had his EKG. I took it to the Cleveland Clinic, where they had a renowned EP department, and showed it to the head of the department – who’d known Michael, even coached him in soccer. He had tears in his eyes, and said that it was abnormal – it showed a very long QT interval. Michael had been misdiagnosed.

This was 1997, so there was no easy access to genetic testing. There was a well-known cardiologist in Rochester who went over our records and said that he, too, thought Michael had LQTS, and that it would be great to prove it. He recommended that we call Dr. Michael Vincent, who was wonderful – that’s how I found out about the SADS Foundation. It took almost a year to get our genetic results, but we did finally get a call confirming that Michael had LQTS, which was the likely cause of death, and that the rest of our family needed to be tested. Michael’s mother and my daughter both also have LQTS Type 1.

The two things that really helped me personally were Compassionate Friends – an organization that helps bereaved parents; I went to their meetings once a month – and the SADS Foundation. They helped put me in touch with a community, and gave me a way to help others through volunteering and donating. I love their annual meetings, their medical and research programs, and everybody there.

These conditions can be particularly hard because the first time a family finds out about them, is often because of an event – like a sudden death, in our case. These conditions are also hard for other members of the family. My daughter was only eight when her brother passed away. When we were told what she had – many years ago – we were told to stop any physical activity she was engaged in (she was a member of the soccer and volleyball teams at the time). We were petrified as parents, because they told us that a sudden startle could trigger an event. We had friends who wouldn’t let her sleep over any more – because what if something happened during the night? It changed her life forever.

I’ve talked to lots of families about grief – about embracing the grief and not running from it. The great physicians, like Dr. Ackerman, come as close to understanding it as anyone outside the experience can, but there’s nothing like talking to others who have gone through this experience themselves.

Grieving is a long process. Over time it gets better – it never goes away, it’s always there, but it eases over time. You can go on with life and find joy and happiness again.

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SADS Spotlight: The Blum Family http://www.sads.org/blog/2022/01/04/sads-spotlight-kathi-blum/ http://www.sads.org/blog/2022/01/04/sads-spotlight-kathi-blum/#respond Tue, 04 Jan 2022 16:35:36 +0000 http://www.sads.org/blog/?p=1549

In 1999, we got a phone call on a Friday from our son who lived on a college campus where his sister also went to school. We were on vacation. He said that his sister had passed away – he wanted to tell us before the police called us.

Nobody knew why she had passed away. She was working at the public safety dispatch the previous night (which was her job at school). In the morning the fire chief didn’t hear from her, and after they called her a few times and didn’t hear from her for over 30 minutes, they decided to check and see what was going on. They found her down, called 911, and started CPR. She was taken to the ER, where attempts to resuscitate her failed.  She was then transported to the coroner’s. Because she was in a college community, the police roped off the area – they didn’t know yet if her death involved drugs or foul play.

When my husband and I arrived at the coroner’s, we were not allowed to see her, and were told they would be doing an autopsy. They warned us that it could take two weeks to a few months to get the results. I remember the coroner saying that even though it was a coroner’s case, they sometimes didn’t find the cause of death. They said that sometimes they ended up writing down “cause unknown.”

A nurse from the ER who was not on duty when my daughter came in called us and said that she was so sorry for what happened. She didn’t think my daughter was mixed up in drugs or a bad situation – and she was healthy, a volunteer firefighter. The ER nurse said that in case the coroner didn’t find anything, she had some information she’d be happy to drop off for us. Her daughter had a condition called LQTS.

My sister was very close to my daughter. She introduced her to lots of girlie stuff, and they went on a lot of adventures together. She wanted to fly out to the service but couldn’t because she had young children. She was talking to my mom about the service, telling her which flowers to get, when suddenly she went quiet on the other end of the phone. She was calling from the bathroom because she didn’t want to wake her children, and her husband was in bed. He heard the phone drop on the floor in the bathroom, and went to see what was going on. He told my mom that my sister had collapsed, and he performed CPR and called 911. She was admitted to neurocritical care; they thought she’d had a seizure. After doing a cardiac workup, they discovered that she had LQTS, and she was given an ICD. She’d never had an episode in her life before that day.

We called the coroner and told him about the new diagnosis in our family. He’d never heard of LQTS, but said it could make sense for other young people he’d seen as well. Because my daughter was a volunteer firefighter, she’d had a physical less than a year prior to her death – and it included an EKG. After fighting HIPAA, we finally got that EKG sent to my sister’s EP in Michigan, who said my daughter had LQTS too.

The nurse who had offered to give us information about LQTS told us about a foundation in Utah called the SADS Foundation that specialized in supporting families. We contacted them and they were very helpful, and gave me the names of about a dozen families who had also lost young daughters to LQTS, and we connected and shared our experiences. It was amazing how similar our stories were.

Two or three years later, my son sent me an email about a research project from Mayo Clinic on LQTS, where they could do bloodwork and genetic testing. I participated in the study. When I got an EKG shortly after my daughter’s death, I was diagnosed with LQTS and placed on beta blockers, which were hard for me to tolerate. I got a cardiac consult with someone on my health insurance plan, who did a ton of tests and said that because I was in my 40s, I would be fine, and that this condition was new and therefore over-diagnosed. He took me off the medication and told me not to worry.

During the course of my testing for the study, I did a treadmill test, where I was again diagnosed with LQTS. They drew my blood and sent it to Mayo, and said it was possible that other family members were affected, and that sudden cardiac arrest does happen to older women. I got another consult, and this doctor said that with my family history, if I couldn’t tolerate beta blockers, I should at least get an ICD. He compared it to a seatbelt in a car – most of the time you don’t need it, but when you do, it saves your life.

A few years later we got a call from Mayo Clinic, saying that they had the result of the research, and that my blood showed my family did have LQTS Type 2. My sister, son, and grandson also ended up having it. My son had already been diagnosed shortly after his sister’s death and had an ICD.  He was told his son, however, did not have it after he had contradictory EKGs.  After the genetic testing revealed he did, he was seen by a pediatric electrophysiologist and placed on medication. He eventually, at age 9, had an ICD placed. My granddaughter, who had been on beta blockers since birth because she was diagnosed with LQTS by EKG when she was born, actually ended up not having it. That’s why genetic testing is so important – because the EKG is tricky to read.

Through the years I’ve kept in contact with the SADS Foundation. I’ve participated in research and been a part of SADS Safe Schools, especially in Modesto, and made sure that all our school districts and school nurses knew about it. They have been a great source of information over the years, which is why we are supporters of the SADS Foundation.

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Advancing Care: Babett Horn http://www.sads.org/blog/2021/07/27/advancing-care-babett-horn/ http://www.sads.org/blog/2021/07/27/advancing-care-babett-horn/#respond Tue, 27 Jul 2021 15:55:57 +0000 http://www.sads.org/blog/?p=1481
Joriale Horn

Can you tell me a little bit about your family’s SADS journey – from diagnosis to where you are today?

Our oldest daughter, Jori, was 27 and at work when she fell straight back, and was gone. Her office was a chiropractor’s, and Dr. Angela Tarjick, a chiropractor, immediately did CPR and called 911 – and was able to bring her back. She spent two weeks in the hospital and they determined she had LQTS, so she was fitted for an ICD. The ICD gave us an extra 9 months with her, but in January of 2016 her husband found her unresponsive. He brought her back, but all her organs began to fail and within hours she passed away.

That’s when we became involved with SADS. We were still getting DNA and genetic testing back, and it wasn’t clear what the markers were. A few weeks after she passed away, I got in touch with a doctor at Johns Hopkins who said, let’s get you connected with SADS and an EP. Myself and my other two daughters were tested. I didn’t have any known gene mutations but was clinically diagnosed via an EKG. Neither of my daughters have clinical issues – but we’re all treated with beta blockers, and once a year we see a cardiologist and EP.

We have a saying in our family – if you hear hooves and you think it’s a horse, you need to think it’s a zebra. We’re the zebras.

Through the SADS Foundation, getting to know other families and their stories and journeys has been encouraging and inspiring.

What was the greatest obstacle to treatment your family faced?

Doctors just being aware of SADS conditions. When we look back over Jori’s life, there were signs – she had one odd EKG when she was 14, but the attitude of her physician was, she’s healthy and there’s nothing to be concerned about. We did a follow-up three months later and they said everything was fine, but if her pediatrician had known more and could have sent us to an EP earlier on, I feel like she would have had better care throughout her life.

What advice would you give to others in the same situation?

Make sure that you have a good relationship with your cardiologist, and that you trust them. If you feel like you’re not getting the right care, consider finding a new doctor. Even though cardiologists are specialists, they may not know about conditions like Long QT.

How has the SADS Foundation helped your family along their journey?

I reached out to the SADS Foundation about 3 weeks after Jori passed away. We were scrambling for answers. We got in touch with the last doctor she saw, and they told us to get in touch with SADS – that they could help us with what our family needed, and help us with genetics and finding a specialist.

Being able to have a reference is also helpful. SADS had live videos that you can go back and listen to over and over. When you originally get the information it can be so overwhelming, so being able to listen to them again is great. Having a localized online community that is proactive and on the forefront with these conditions is very reassuring.

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Advancing Care: Kennedy Cooper http://www.sads.org/blog/2021/07/09/advancing-care-kennedy-cooper/ http://www.sads.org/blog/2021/07/09/advancing-care-kennedy-cooper/#respond Fri, 09 Jul 2021 16:22:36 +0000 http://www.sads.org/blog/?p=1469

Could you talk a little bit about your family’s SADS journey?

My story begins on June 11, 2001, when my mom had a Sudden Cardiac Arrest. And unfortunately, she passed away. When you’re six years old, and you lose a parent unexpectedly, there are so many unanswered questions– like, Why did she die? How did she die? It was scary to go to doctor’s appointments, and run on treadmills, and be hooked up to heart monitors. It’s very confusing when you’re that age, and all those tests just keep giving you no answers.

My sister and I were put on beta blockers, just as a precaution, and our doctors made sure that we weren’t doing anything that could put us in a jeopardizing position – which was tough, because we still didn’t know why we needed these medications when we had no answers and experienced no symptoms. I got a little older, and as a teenager, it’s hard to want to take medication for reasons you still don’t understand.

Fast forward to 2013 – I was 17 at the time. And from 2001 to 2013, we still had no clue what caused my mom’s death. My grandmother discovered the SADS Foundation and became connected in the community. Through SADS, she got in contact with Dr. Michael Ackerman from the Mayo Clinic, who took on my family’s genetic case and kept a very watchful eye. He became our protector, someone we could go to and ask questions. We felt safe knowing that we had someone we could reach out to.

In 2013, we had a reason to go visit him in person – because that’s when I had my cardiac arrest.

I was a senior in high school, and physically active. I was working out at the gym. On this particular Wednesday morning, I felt lethargic going into my weightlifting class, which was very unusual for me. I got to about my fourth or fifth repetition, and it was almost like someone had a little carafe with nine ounces of static that was shot into the vessels of my heart.

I collapsed and immediately went into cardiac arrest. I feel very grateful that the two instructors in that class reacted right away. They performed chest compressions for about 15 minutes until the paramedics arrived. After the paramedics got there, they rushed me to the hospital to intensive care. I was put on a ventilator, and it was not looking optimistic at all. This was the first time since 2001 that my family had a reason to panic again. They wanted to transfer me to a different hospital to start CT scans and see what sort of brain damage I had. When you experience out-of-hospital cardiac arrest, about 90% of people have some sort of serious brain damage. It was a miracle that the results we got back showed absolutely no signs of brain damage.

I remember waking up in the hospital, very unaware of where I was and why I was there. And I remember my dad sitting at the foot of the bed. He quietly told me what had happened, and the first thing I thought of was my mom and her younger brother (who had also passed away of cardiac arrest). This experience was a strange connection I had with them.

We were able to gather my mom’s DNA information from the coroner’s office. They tested my DNA, my sister’s DNA, and my grandmother’s DNA. We’d been through so many years of being told “no” for genetic heart conditions. It felt like we were at a dead end. Then, Dr. Ackerman tested for CPVT – and that was our smoking gun. My cardiac arrest ultimately became the answer for my family’s genetic journey.

Since then, I’ve had an ICD. It feels like my own little best friend – a security blanket watching over me.

What was the biggest obstacle to receiving proper treatment?

It can be really tough to feel like you’re at a significant roadblock. And to feel like you’re going to have to live with a question mark for the rest of your life. But it’s so important to channel your remaining hope, and use that hope to keep asking questions. Even when you feel like you’ve exhausted all the questions in your book, never stop asking questions.

What advice would you give to other families in a similar situation?

Don’t feel like you’re at the end of your story – you’re just at a certain chapter. There’s so much life left to live. Ask questions, use resources, go to SADS conferences and watch their videos, and stay connected with others who are in similar waters. Learn to lean on each other. Nobody is alone in this, even when you feel like you are. And don’t feel ashamed for asking questions – that’s been the biggest game-changer for my family.

How has the SADS Foundation helped your family on their journey?

It’s because of SADS and Dr. Ackerman that my family got answers. The cherry on top was being at a SADS conference in Ohio, where Dr. Ackerman was speaking, and he actually told my grandmother and I our genetic results, and it just felt surreal. I feel so grateful for everything that the SADS Foundation has done to get our questions answered. And to help my family be set up for success.

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Silent Killer http://www.sads.org/blog/2018/11/08/silent-killer/ http://www.sads.org/blog/2018/11/08/silent-killer/#respond Thu, 08 Nov 2018 16:57:44 +0000 http://www.sads.org/blog/?p=780 When you’re six years old, the world is your oyster and your imagination is taller than you are. Nothing bad could ever happen because the toxic realities of life far surpasses our level of comprehension at such a young age. I always found comfort in the security of my parents’ arms. Whether that meant holding my dad’s hand through the gargantuan city of the Costco grocery store, or sitting on my mom’s lap in “big church,” I never doubted for one second that any fear could shake my faith or my family. Then June 11th, 2001 happened. The woman whom I loved, and who provided me with security, was taken away without any warning. This was a major violation of my expectations and my sense of the world and sense of control became assaulted. At the time, the only struggle I had was learning the choreography of tying my own shoes. Now here I am on a Monday afternoon drinking the poison of my own tears, trying to comprehend my dad’s words when he says “Mommy won’t be coming back. Jesus visited her today and they flew to Heaven hand in hand.”

No matter what your age, death is not easily defined. It has many befuddling attributes, but there was one in particular that trapped my mind in a triangular nightmare of utter confusion: Death’s irreversible ability. Once your body is dead, it cannot be alive again on this earth. Every plant, every animal, every person. This was a wild idea; I’d talk about dead people as if they went on a trip, took a nap, and trusted the possibility that dead things can come back to life with the help of water, food, medicine, or even a little pinch of pixie dust. It was as if certain groups of people were protected from their inevitable expiration dates. Teachers, parents, Mickey Mouse, and myself were “untouchable” until old age had its way. It’s funny how as children, we so often lace our fingers with the hand of our own innocence.

For twelve years, the answer to her death became my family’s Excalibur. Month after month, test after test, negative result after negative result and still no answer. I was afraid of finding comfort with this insulting mystery. Maybe I was dreaming? Would I wake up the next morning, rub my eyes raw and find time had stood still? Maybe I’d find her at the kitchen table with my dad sitting side by side, writing notes in the margins of her Bible. My sister and I would be getting ready for school and then we’d all gather for breakfast before we ventured off in our daily schedules. As much as I wanted to speak that dream into existence, I knew I had to return to my new reality: feeling alone in a familiar place, standing on expanding pavement with my hands in shallow pockets.

You’ve come this far in my story, and you may be wondering if we found our mysterious answer. If I told you in one post, we’d be seventeen paragraphs deep and your eyelids would be taped to your forehead like a Tom & Jerry cartoon. I can assure you that the sword in the stone does get extracted! It just had to take my own heart to free Excalibur…

(Cliffhangers… Am I right?!)

 

 

 

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