EDITOR’S NOTE: Corinne Ruiz shares with us the heartbreaking story of her daughter Olivia, who died at age 14 from sudden cardiac arrest attributed to Long QT Syndrome.
April 22, 2004, my life was changed forever. My 14-year-old daughter, Olivia Corinne Hoff, died of sudden cardiac arrest.
Olivia was the perfect picture of health, so I thought. She was always involved in sports and cheerleading; so of course there could be nothing wrong with my daughter. About 2–3 weeks before Olivia died, she complained about being lightheaded, as if she were going to faint. She started having bad headaches, left arm pain and severe neck pain. Then one night, Olivia came running out of her room. She was having trouble breathing with pain in her chest. I remember holding her and calming her down until she was okay. I told her that she was going to see her doctor.
I made the appointment, but her doctor wasn’t in, so she was seen by another doctor. The day of our visit, the doctor listened to her heart, checked her blood pressure and said everything was normal. He then asked Olivia about how she felt before her visit. We both explained to the doctor about the chest pain and all of the symptoms she experienced a few nights before. After listening to us, his diagnosis was “stress.” I remembering thinking “OK, she is a freshman in high school and does have a lot going on, so OK, she just needs to slow down.”
I accepted this diagnosis and we left.
Little did I know that Easter Sunday, April 11, 2004, would be Olivia’s last day alive. As I look back, I can remember what a wonderful day we had at the park with all of our family. Olivia looked so pretty. I can still see her smile.
Our day at the park ended and we came home. We spent the rest of the evening together, watching movies. Around 10 p.m., I said goodnight, as I had to get up for work the next day. Olivia came into my bedroom a few minutes later and told me she was going to her friend Jordan’s house, who lived two houses down. I told her okay but to come right back, as she had school the next day. I will never forget how she kissed me good night and said “I love you mom, see you in the morning.”
The next morning I got out of bed, took my shower and, as usual, went into Olivia’s bedroom to wake her up for school. I remember walking into her room, opening her window blinds and saying “Olivia, it’s time to get up.”
I looked at her and my first thought was she must have gotten hot during the night because she was uncovered and her right arm and leg were hanging off the bed. I called her name again and there was no answer. This horrible fear and panic came over my entire body as I touched her, she wasn’t breathing. I starting yelling her name, yelling at her to wake up but she didn’t move.
My son came running into the bedroom as I was crying and screaming. As I look back now, my poor son, he was trying to calm me down, have me dial 911 and tried to help his sister. The 911 operator was on the phone with me, giving me instructions to give to my son. I remember him gently picking Olivia up and placing her on the floor, as instructed. During this time all I could think was “This is not happening. Olivia can’t be dead, I’m dreaming, this is not real.” But it was.
The ambulance arrived and asked my son and me to leave the room. They immediately got Olivia ready for transport. We followed in our car. When we arrived at the hospital, we couldn’t see Olivia. Finally, after an hour, we were taken into a room where my daughter was. There she was, tubes and needles all around her body. My baby girl, how could this be? I remember touching her face, her hair and telling her “Olivia, you’ve got to be okay. Mommy can’t live without you.” There was no response.
Olivia was unresponsive, and for 3 days, doctors were trying to figure out why this seemingly, healthy 14-year-old girl would go into sudden cardiac arrest. They just didn’t know. In the meantime, Olivia went into “Code Blue” several times and everytime she did, I just fell to the floor and cried. Doctors, tests and more tests, then finally, a diagnosis: Olivia had Long QT Syndrome.
When I was told, I just looked at the doctor and said, “What is Long QT Syndrome? Why didn’t I know? Why didn’t the doctor detect this when she was last seen? I don’t understand any of this.”
My body and mind were numb; I felt as if I were lost in a fog and couldn’t find my way. The doctors decided it would be best to have Olivia airlifted to the Childrens Hospital in Los Angeles, which was about an hour away. I rushed home, got some clothes together and went back to the hospital. The helicopter arrived and the special team of doctors went into Olivia’s room and prepared her for her flight. When we arrived at the Childrens Hospital, Olivia was in a room, hooked up to the breathing machine, with all the tubes and needles around her body. For the next 7 days, the doctors continued to run test after test. During this time, there was nothing I could do, as nurses would use suction to clear Olivia’s throat and each time they did, my daughter’s body would react and I could see tears in her eyes. I told the nurses they were hurting her, look she’s crying. They told me it was just a “gag reflex,” that she didn’t feel anything. Each day more tests, scans to check for brain activity, and each day, Olivia’s body would go into convulsions.
Ten days later, April 22, 2004, the doctors told me that Olivia no longer had any brain activity, that her convulsing would get worse, that Olivia’s body was slowly starting to shut down. It was time to take my baby girl off the breathing machine. My husband and I were faced with a decision no parent should have to make; we had to let our Olivia go. The nurses allowed me to clean Olivia for the last time. I changed and cleaned her the way I did when she was a baby. I brushed her hair, kissed her perfectly polished “pink toes” and told her it was time to go home. We watched and cried as Olivia took her last breath.
Today, 6 years later, I cry for my daughter every day. Not a day goes by that I don’t ask myself:
If only I had been told that there are screening tests or preventative treatments.
If only I had known that my Olivia looked normal but her heart wasn’t.
If only I had known about Long QT Syndrome.
If only I had known, then maybe my daughter would still be here with me.
I am now Olivia’s voice. I am committed to raising sudden cardiac arrest awareness in my community. My daughter’s death will not be in vain. My daughter’s memory will live on and will never be forgotten.
Olivia Corinne Hoff
June 27, 1989 – April 22, 2004
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September 2nd, 2010 at 11:18 am
Joe, I thank you with all of my heart for sharing my Olivia’s story. Even though it has been six years, it seems like yesterday.
August 23, 2010, an AED was donated to Olivia’s school, Rosedale Middle School, in memory of Olivia. The SCAA Sacramento Chapter and president Mark Storace made this possible.
Deciding to fight back and make a difference did not happen overnight for me. I was so consumed with grief and couldn’t and didn’t want to live anymore. Today, as I write this, I am determined to make a difference. Through me, Olivia will continue to save lives.
Joe, I hope Olivia’s story will help educate other parents who have children experiencing LQTS symptoms and follow up with testing.
Again, thank you.
Corinne,
Olivia’s mom
“Raising Awareness So Others May Survive”
September 2nd, 2010 at 11:27 am
On behalf of Cardiac Science, Corinne, thank you for everything you are doing to “Raise Awareness So Others May Survive.” Your story inspires me personally and the photo gallery you shared touches me (and I’m sure many others) deeply.
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If this article inspires just one parent to get one defibrillator in their child’s school and another where after-school athletics (especially lacrosse, contact sports, and martial arts), know you will have made a big difference.
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Readers, if this post does inspire you to act, leave a note in the comments so Corinne can see her effort is touching people’s lives and making a difference.
September 24th, 2010 at 1:43 pm
Thank you so much for sharing Olivia’s story. Our daughter (4 years old) was just recently diagnosed with LQTS. We will see the cardiologist on Monday. I’ve read so much information on the internet concerning the disorder, and I’m absolutely terrified. Our daughter has had “fainting spells” since she was almost a year old. It wasn’t until May of this year that the fainting spells turned into fainting spells followed by a seizure. Of course, the first test ran was an MRI, next in line was to check her for seizure disorder. Had it not been for the technician’s at the hospital that ran the tests, we would have went home with the diagnosis of Syncope. During the prep for the MRI, several hospital staff asked us why we were there, etc. At least 3 of them asked if her heart tests came back okay. We told them no one has mentioned her heart. So, after hearing this, we pushed the issue of getting her heart checked. And now we know!
I wish you luck in getting the word out about LQTS, and trust me, after what we’ve learned in the past few months, everyone needs to be aware.
September 25th, 2010 at 8:45 am
Crystal, best of luck on Monday. You are fortunate to have her LQTS diagnosed. You’re welcome to come back and let us know what happens. It may help another parent learn what to expect.
September 26th, 2010 at 7:04 am
Thank you! I will be sure to post our visit results.
September 27th, 2010 at 5:19 pm
Joe, today we received some conflicting information. The cardiologist says our daughters EKG and Echo show a healthy heart. We found out that the Neurologist was the one that made the “diagnosis” of LQTS from her EEG. I’ve done a brief search on the internet to see if an EEG can show signs of LQTS, but so far, I’ve found nothing. Now we’re wondering what to do, and where to turn. If we listen to the Cardiologist, we’re still stuck with the questions of what’s causing the fainting and seizures. We’re scheduled to see the Neurologist on Thursday, and hope that he can shed some light as to why he thinks she has LQTS. ???
September 27th, 2010 at 5:47 pm
Crystal, thanks for reporting back. I’m not qualified to comment on the conflicting diagnoses and hope someone with a clinical background reading this can offer some perspective.
Keep us posted!
September 28th, 2010 at 9:59 am
Oh sure, I understand. I wanted to point this out because right now it seems to us that getting a proper diagnosis isn’t easy. I did find that the LQT doens’t always show on an EKG. We’ll see what our appointment on Thursday brings. We’ve actually comtemplated talking to our Pediatrician to see about the genetic test. If our daughter doesn’t have any of the genes of LQT, that might eliminate further, unnecessary testing. We’ll see.
September 30th, 2010 at 3:16 pm
Met with the Neurologist today. No one seems to know who put “4 year old diagnosed with LQTS” on her file. Doctor says we should just wait and see if she has another episode. In the meantime, I’ll continue to search the Internet.
October 4th, 2010 at 3:29 pm
That’s odd. But good news, I suppose. Good luck and keep us posted!
October 13th, 2010 at 1:15 am
What a sad story it made me cry even though i have been through losing my own daughter to sudden cardiac arrest. My daughter was suppose to be healthy also and i was told her heart was fine and all her test were good. she checked out healthy. about 8 months later after being seen by a peds heart doctor and her pcp she died suddenly and unexpected and the cause of the death was unknown. she passed on 11/16/1996 just sixteen days after her sixteenth birthday. I have looked for answers for years and done a lot of research. Now i found out that she most likely had Short QT Syndrome and this syndrome had only been discovered in 1999. so when Kim was alive they never knew about this condition yet. Today just this year my youngest daughter has the ICD Implant as she to has Short Qt Syndrome and doctors around were we live still don’t know a lot or if anything about short qt! I too have the ICD /Pacemaker now. And my oldest daughter may also have short qt she is waiting to see a specialist who deals with heart arrhythmia disorder. as she most likely has it too. If anyone needs info on any of these heart conditions please go to the web site http://www.sads.org they can help you and you can call them if you have questions or if you think your child may have a sads condition as they help spread awareness about heart arrhythmia disorder that can go undetected and can be inherited. doctors need to know about these conditions and so does everyone. and Crystal, don’t give up and make sure your daughter doesn’t have long qt ! and don’t take their word for it ! take her to a heart specialist that can do test to see if she has a heart arrhythmia of any kind like a EP Study !
October 13th, 2010 at 1:39 am
Barbara, thank you for sharing your story with us. It sounds as though you and your daughters, now equipped with ICDs, are taking every precaution.
October 13th, 2010 at 6:59 pm
yeah, I was Blessed that I found the doctor online that actually discovered Short QT Syndrome and have been sending him our EKGs and some family members EKGs too. And my youngest daughters EKG showed the short qt on hers. Mine was hard because I had a fast heart rate so I had to go through getting an EP study done before getting the ICD Implant.
Since my daughters showed up on her EKG and she had a heart rate of 60 which was low, she didn’t have to get the EP Study done. They like for your heart rate to be low on your EKG to determine Short QT for sure but that can be hard if you have a higher heart rate. Although If you have a Short QT it will still show up on your EKG with a high or low heart rate. But the guidelines they use is it is best to have a low heart rate if possible and if not then you have to other tests done, like a Holter monitor I wore for 48 hrs and my heart rate still wasn’t low enough so then i had to have an EP study to see if i had a heart arrhythmia disorder.
I am thankful to the doctor who helped us with it and for him talking to our doctors about short qt syndrome. If not we may have never found all this out and got the help we needed!
Losing my daughter opened the door for us to find out everything and helped us to know all of this that we never knew before and saved us! She truly is Our Angel.
It’s so sad that she could not be saved and I ask myself did she have to die in order for us to know and to help save her family? Because she really was such a wonderful person and would help anyone she could help. But i read some where that The Dead Teach The Living, and that is so true.
Sometimes we lose a lot in order to find out something. and that is hard and seems so unfair. But most of all I give God all the credit as In Him I am strong and have made it this far. After all these years I still Miss Kim dearly and you never get over losing a child you just learn to live with it and live day by day one at a time. and keep their memory alive that is important.
So now because of her I try to get the word out about short qt and other SADS conditions that can cause sudden death. Thanks for reading and for sharing stories of others who have lost a child. It helps to know you’re not alone in your loss.
October 13th, 2010 at 10:55 pm
Barbara, I hear so much emotion in your reply. My heart goes out to you. If you, like Corinne want to share your story in a blog post like this one that you can share with your friends and circle of influence, you are welcome to contact me at jhage@cardiacscience.com.
October 14th, 2010 at 9:35 am
Joe, I can’t thank you enough for sharing Olivia’s story.
Moms and dads, if your child tells you they aren’t feeling well, that they feel as if they are going to faint; or if they have any of the warning signs my daughter had, please have them tested; as they may have a heart condition.
We can make a difference by sharing our stories. We can make a difference by educating and raising SCA Awareness in our communities.
To all those who read Olivia’s story, Thank you!
Corinne Ruiz,
Olivia’s mom
October 26th, 2010 at 4:20 pm
Hello! My son has struggled with seizures the last 8 years. He has never been controlled by seizure medicine in fact his seizures would get worse with most medicines. On keppra the higher the dose he would have 5 seizures in a 15 min. period. We soon seen food…was a huge trigger. He was put on the Modified Adkins Diet in April…he became seizure free during the day for the first time in 8 years. Nights were still horrible so the doctor put him on another seizure medicine. Oh how I wish we didn’t change…things went down hill. He was admitted 2 months later….with I believe was aseptic meningitis brought on by Topamax. The doctors doesn’t agree but this done horrible damage. My son didn’t know his name…his eyes was glazed over in allot of pain.. MRI and CT scan didn’t show…but spinal tap revealed 14 ml extra fluid. It took over 2 months to get him back to my son after 1 month of therapies. But after getting out of the hospital…Caleb started having “drop attacks” which are violent and sudden. His blood pressure gets down in the low 70′s at night…and if he gets out of bed he will faint and then go into a seizure. I need help…and the neurologist are no help…they just want to try the last 2 seizure meds that he can’t take. Has anyone heard of this??? He will have seizures in his sleep…and have episodes first thing in the morning. Then after giving him a shake (high fat hot chocolate) he has to sit for a half hour then he will be fine until the afternoon. He is having 2 or 3 episodes usually about 2 hours apart. Today he fell asleep and then got up to fast and had 2 episodes within minutes. I just feel this might be a heart problem…. has any body ever heard of this?
Debbi
dsprang@dbscorp.net
April 7th, 2012 at 9:46 pm
Rest in peace Olivia
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