My Story - My Daughter Died of Long QT Syndrome. Everyone Should Know About this Silent Killer
November 30, 2007 by Death of a Child
Filed under Blog, Dealing with Grief, Death and Dying, Death of a Child, Q&A
It has been three years since the death of my daughter. Here is my personal story.
It was April 12, 2004 that I went into my daughter’s bedroom to wake her up for school and found her not breathing. My daughter was in the hospital for 10 days, on life support. The doctors were not sure why this seemingly healthy, 14 year old girl, would just stop breathing during the night. After a few days of running tests, a cardiologist was finally able to give us a diagnosis, Long QT syndrome.
What, what is Long QT Syndrome? What were the warning signs my daughter would have had? Why didn’t her pediatrician detect this problem at birth? Why, when I took her to the doctor for headaches, dizziness, feeling as though she were going to faint, why didn’t they request an EKG, or why didn’t I request it? Why, because I was unaware of this silent killer known as Long QT Syndrome.
Olivia had always been an energetic, bright, beautiful child. She was so curious about everything, always wanting excitement and adventure in her life. Olivia was very active as a cheerleader and loved to play basketball. Olivia was very competitive, healthy as can be, so we thought.
April 22, 2004, my 14 year old daughter, Olivia was taken off life support and passed away .
Not a day goes by that I don’t ask myself, “Why didn’t I know, why didn’t I see the warning signs”? If I had, maybe Olivia would be alive today. Unfortunately, for me and my family, our life is forever changed. As a mom, I cannot express the depth of pain in losing a child. When my daughter died, a part of me died too.
I hope that by sharing Olivia’s story, more people will listen and know that Long QT Syndrome is often misdiagnosed. Hopefully, EKG’s will be required for all students who play sports or even better, have EKG’s become part of kindergarten screening. It’s too late for my daughter Olivia and our family. Please don’t let it be too late for you and your family.
My tragedy does not end here. My son, who is now 24, became addicted to heroin. He said this was his only way of coping with the pain. I am now in fear of losing my son and only child. I am currently on Paxil, Ativan and still living with the pain of grief, anxiety, depression looking for some sanity and happiness in my life again. I don’t even know if this is possible anymore. I don’t know what to do, I am so lost. Olivia’s room is still as she left it and my son is slowing killing himself. I know part of the healing process is accepting life without my daughter but how do I save my son, my marriage and myself?
Thank you.
Corinne
Drs. Gloria and Heidi Respond
Dear Corinne,
We are so very sorry for your loss and for all the intense pain you are still experiencing. As mothers we question ourselves endlessly for answers when there are none, and we often go to guilt over things we couldn’t possibly know or know how to prevent. Nothing prepares us for the loss of a child and there are few words that can comfort us. But healing can and does take place in its own time and its own way.
We strongly encourage you to get involved with a group like Compassionate Friends that can give you some support and understand your deep pain. Your husband and son could also benefit from the caring and compassion of such a group. You can find them at http://compassionatefriends.org If there is no Compassionate Friends group in your area, contact your local hospice to learn of any grief groups that may be available. We have found that the load of grief is lighter when it is not carried alone.Â
We invite you to listen on Thursday mornings to the radio show Healing the Grieving Heart You can find information about it and a link to it on the first page of http://www.thegriefblog.com You might also find a number of past shows that can give you help and comfort at http://thegriefblog.com/grief-grieving-death-of-a-child/ There are several for siblings that might also help your son and he could listen to them on his own computer in his own time in privacy. Our new book Teen Grief Relief might also give you some ideas on how to help him.  We often read letters from The Grief Blog on the show and you might want to listen this coming Thursday because your letter is pertinent to our show topic. Dr. Norman Fried will be discussing how to help children and adolescents who are grieving and, while your son is 21, you still may hear of new ways to help him cope.
Sharing Olivia’s story could, indeed, help many others and we hope that you will continue to share what you have learned about Long QT Syndrome with as many as you can.
We encourage you to go to http://thegriefblog.com/grief-grieving-death-of-a-child/ and listen to last week’s show. The guest, Gail Minger, talked about her son who died in a dorm fire at the state university he was attending. She worked successfully at getting the laws in Kentucky changed to make all state supported schools comply with safety codes and report all fires incidents and other crimes on college campuses. The new law was named after her son and is called “The Michael Minger Act.” What if you could do that kind of thing with Long QT Syndrome so other children would be screened and Long QT Syndrome, as well as other hidden cardiac malfuntions, could be found before it was too late?
We will post your letter on the blog so our visitors will will learn about Long QT Syndrome.
Again, our sincere condolences,
Drs. Gloria and Heidi Horsley
Dear Gloria & Heidi,
Thank you for your advice and the work you both do. I listened to your radio show for the first time yesterday evening and felt the need to share my the loss, my Olivia. I look forward to listening to Gail Minger’s story. You have encouraged me to continue my mission to bring public awareness to my local community about LQTS. It has been three years since Olivia’s death and I will be her voice.
Thank you.
Corinne
Corinne,
I too lost a child at age 14 to undetected heart disease, HCM ( Hypertrophic cardio myopthy )In August of 2002. Travis was my oldest son and my best friend. He was an exceptional young man, being a single parent to him all his life he watched over me and loved me like no other. Our bonds are not broken by his death. I am in tune to him and feel his presence in my life every day. Love knows no boundries. I found a CD called Heaven and Earth by Cindi Bullen’s most instrumental in healing. The artist lost a child to cancer.I have boxed with god for 5 years, everything I believed in I have challenged,. I have suffered extreme depression been on and very much abused psych med’s.and now as 2008 has come I am finding a balance, a ” Norm ” I am finally relieved of the Acute Pain I so suffered in my loss of Travis.I have two surviving children, 11 and 16, I fear for them yet I know that I now can help them after helping myself and getting off all the meds.What saved my life is connecting with other families dealing with the same loss as I .
I am affiliated with Parent Heart Watch ( parentheartwatch,org )We are a grass roots org in a plight to bring awarness to LQT and HCM and various other silent cardiac killers. We are formed mostly of all parent’s whom have lost a child to sudden cardiac death, I spend countless hours reaching parents whom have recently had such loss as ours from sudden cardiac death. what I have found so heart wrenching is all parents I contact say ” why didn’t I know about this ??” I have made efforts in many communities to bring awareness and change, I have worked on legislation, placed AED’s in many communities, and sponsored a heart screening this past june. And I am on the outreach commitee of PHW.. By being an advocate I am a voice for your Olivia and my Travis.I find my journey to be easier since I got active to make changes, to spare one mother the journey we walk every day. If I spare one parent this nightmare then my child did not die in vain. they say one child will die from sudden cardiac death to save another’s life. There is so much being done across the country by parents like you and I , I urge you to join hands with us, we support one another emensly in all aspects of grief and advocating.Please contact me at any time, I would like to embrace you and share my story with you. Maura
maurafmendoza@hotmail.com
Corinne,
My heart goes out to you in losing your precious daughter, Olivia. Maura has expressed it so well. I too belong to Parent Heart Watch. I lost my precious 22 year old daughter Emilie, when she died suddenly in her sleep, on Aug. 30, 1997. Through genetic testing of myself, my husband, and my two living children, we now know it was Long QT Syndrome.
My daughter had all the classic warnings–feeling like her heart was “racing” during exercise and strong emotion, a history of fainting in several different situations, even once she had tonic clonic movements like a seizure, after fainting with fear in a doctors office–right in the dermatologist’s office. He said you can have a “seizure” because of the lack of oxygen during a vaso-vagal fainting spell. She saw two different adult cardiologists in about 8th and 9th grades. The same Holter monitor reading read as positive after death, was read as negative during life. It takes an expert to diagnose it most of the time. A child who has fainting, light-headed spells, etc. should be seen by a pediatric cardiologist.
Feel free to also contact me as I would like to help you with your grief.
As for your son, it is very hard to help someone at that age if they don’t want to be helped. Sometimes I’m afraid they have to hit rock bottom before they realize that they are really the only ones with the power to heal themselves, and they have to want to.
The one thing I’ve learned with my grief is it’s a very solitary emotion, and you must learn to soothe yourself, no one else can do it for you. It’s very important to surround yourself with only supportive people. You must take care of your own body with exercise, eating healthy, getting enough sleep, etc. I would love to try and help you turn your horrible loss into something more positive. Feel free to contact me at my E-mail address. God bless, my heart also bleeds with yours. You don’t have to be in this whole thing alone. There are many of us out there that understand and care very deeply about your loss.
God bless you. I will pray that your son’s heart will be touched, and that he will want to move on to something better in his life.
Dear Corinne,
I’m sitting at my computer reading your story in tears…I’m so sorry for your loss…I too lost my oldest child in 2004 my Daughter Teneale she was 12yrs old and we think (yeah think) she to had long QT she was also healthy, sporty and just full of life such a beautiful soul she passed away in October 2004 just after she had turned 12 she was at school and fainted playing with her friends we had had no other signs she had never fainted she was always a little pail but always in good health (we didn’t have a clue)…She too was in hospital well 9 days on heart bypass and life support…I can’t for the life of me figure out how I will live to never see her again … I too like you never thought I could go on not seeing her every day let alone every month, year, and now coming up 4 years I don’t know how I have managed it but I have…I feel every inch of your pain and I cant live I feel dead inside I have 2 other children my middle daughter is now 13 and my son is 11… My Daughter Micaela is on heart med’s and carries a defib everywhere she goes (her life well if u can call it that now she has so many restrictions) is an everyday hell… And everyday I live in fear for the next phone call to say it has happened again, I cant cope I feel im standing on the edge of a cliff with someone’s finger is in my back just waiting for them to push me over, I live in constant fear that I will loose another child to what they think is long QT we still don’t know for sure nearly 4 years on and are none the wiser with no answer’s…I don’t know how to get on with things I mean I do get out of bed everyday and do what I need to do for my other 2 children (how do I now as mother fully give myself to our other children to love them the way they deserved to be loved the way I loved them all so much when I had them all hear and alive and healthy)but now with no emotion I feel like a robot I don’t go out I fear if I go to far and something happens with my daughter that I wont get there in time life will never be the same again If life isn’t hard enough that we lost our daughter the grief the pain is unbearable the sadness the emptiness to live life everyday but the added worries of our other children and if they too will be taken away as it is such a reality u now know IT CAN HAPPEN TOO YOU…
I LOVE YOU SO MUCH TENEAL JADE forever in my HEART…
Thanks for listening to my story…
Amanda…
Dear Amanda,
My heart breaks for every Mom that has lost their child. It’s even more painful when they are born with an illness, such as our daughters, and we don’t even know, until its too late. Amanda, did your daughter Teneale ever complain of feeling weak, dizzy or chest pains? The reason I ask is because my Olivia did. She started getting the weakness and chest pain more frequently. I remember her running into the livingroom holding her chest because it hurt so bad. I took her to the doctor and the diagnosis or should I say “misdiagnosis” was stress. So we left the doctor’s office thinking okay, it’s just stress. Little did I know that in 2 weeks my daughter would go into cardiac arrest, be on a breathing machine for 10 days, then die. During these very long, painful days, I just kept thinking this cannot be happening to us. I will never forget the day we had to let her go. I can remember every part of me wanting to die. Every part of me screaming with pain. I kissed Olivia good bye. To this day, I can still feel the pain of letting Olivia go. I felt such anger. I didn’t want to live anymore. Grief is so very painful, such a difficult journey that we never thought we would travel. In the six months that followed, I was numb to everything and everyone. I was in my own world of pain, confusion and anger. It as taken me four long years to finally stop being angry with God; four painful years to finally come to the realization that my life is forever changed. I am a different person. I now know that I will always live with a broken heart. I will always live knowing that a part of me died when Olivia died. Amanda, allow yourself to GRIEVE. Allow yourself to CRY. ALLOW yourself to HEAL, no matter how long it takes. Do not look ahead, focus on one day at a time. I found that if I thought about the future, my anxiety would set in. I couldn’t and still can’t think about a future without my daughter. Amanda, I can say that now my life is focused on educating parents about LQTS. I know that God has a purpose for me. I have become involved with Parent Heart Watch and The Compassionate Friends. I will not let Olivia’s death be in vain. I will continue to move forward helping other parents with their grief. I will keep my daughter’s memory alive. I will forever do whatever I can to honor my Olivia. God has a plan; I just have to wait, listen and be obedient. I know he has not forgotten me. I know that he feels our pain. I have a renewed Faith. I survive because I know one day we will be reunited with our daughters. Amanda, until I hear from you again, know that I will keep you in my prayers.
God Bless,
Corinne, Olivia’s mom
Dear Corinne
Thanyou so much for your kind words to me…
Too answer your question NO Teneale didn’t have any chest pain,no weakness,no dizzy spells… I can remember once when she was getting her underarms waxed maybe 6mths before, when she went very pale and said she felt like she was going to faint but that was it nothing else ever…You know its 3yrs and 7 mths and im still very angry very much still in pain not evryday anymore like i was but still very often I can’t Get past the WHY HER stage the SO UNFAIR stage… I really think why im stuggling so much all the time is because of my other daughter Micalea now 13 who so they say has borderline long QT…I find I live my whole days just waiting for something bad to happen all over again its so hard to just pick up and get going on with life when im so afraid it will happen again,cause the sad thing is I now know it can happen to me (it has) what’s to say it wont again thats what I cant shake off, that feeling of loosing another child (I know I just couldn’t bare it all over again) (you would have to lock me up and throw away the key)… It makes my grief so much more on the back foot and not dealing with it the way i should… (worry replaces my grieving process)…Im so glad that you have your faith and that you find some help when you look within (god)…But that’s not for me… I cant beleive in something that is so unkind and so unfair I can’t beleive in a god that would do such things to children (sorry)… I too can not wait to be with my beloved Teneale death is no longer a scarey thought for me… Not thatI would want an early exit from this world just yet I need to still be hear for my family and I want to be hear for them I want to see my children grow and become fine young people… It’s so hard as I wanna be 2 places at once…
Thanks for helping with your words…
I think of you often…
xoxo Amanda… Teneale’s Mum
Amanda,
I too have had a struggle with ” GOD ” . I lost my oldest son nearly six years ago . I have boxed with God every day since. Do not ever apologize… Your feelings are real and I validate them from my experience. I have learned to have acceptance, to open my heart again.To trust in loving and allow myself to be loved. If I didn’t have two surviving children I would have made my exit a long while back. I cannot tell you how long the acuteness of your pain will be, as we are all on an individual journey, but I can share my experience that it somehow lightens.That eventually the pain stops throbbing and become an ache although constant . I was stuck in the “why’s and Why Travis for so long, I was consumed and obsessed for so many years in anger that I realized just this past year that my youngest son whom was 5 when Travis died and now 11 , that I missed his entire elementary school years. I have barley any recollection of his life.I was so consumed in my loss I lost all that lived on. I also became estranged from my middle child who was 11 at the time and now almost 17. He couldn’t bare my emotional chaos that ran rampant through all aspects of my shattered life. I can only continue to offer him a new beginning when and if he ever decided to reenter my life. I am stable now, I have been given back many blessings I took for granted or pushed from my life. I make a gratitude list EVERY day , and at the top is always ” I am grateful to have had the privilege of being Travis mother and caring for him for 14 yrs. Love knows No boundaries, our relationship with our children continues and our love for them still grows everyday.The relationship never ceases. If ever you need some one to talk to please don’t hesitate to call upon me day or night, I’d love to talk with you on the phone so email me and I’ll give you my no. maurafmendoza@hotmail.com
Maura York Beach Maine
Travis Mendoza
Sunrise 7-09-1988
Sunset 08-22-2002
Dear Amanda,
It’s okay to feel the anger you are feeling. Everyone, every parent will handle grief differently. I know how hard it is to get past the WHY HER stage, the SO UNFAIR stage. You have every right to be angry with God. I just read Maura’s response and she is right. “No one can tell you how long the acuteness of your pain will be, as we are all on an individual journey.” I can remember feeling stuck for so long very long. I still cry every day. I want to hold my daughter again and never let her go. Right now my 25 year old son is addicted to heroin. I have tried in every way to help and save him but I can’t. Just yesterday, I asked him to move out because he started stealing from me and others. Today as I sit here writing to you, I too question and asked God WHY? First my Olivia and now my son, how much more? I feel as though I am now grieving for my only two children. I look around my immediate family and their lives seem okay, they are all still together and this angers me. Today my son had to go to court to find out what is going to happen to him. Unfortunately, I was not able to go because I was in the hospital having a procedure done. I was diagnosed with colon cancer 1 year before Olivia died. Today is my 5 year follow colonoscopy to see if I am cancer free, I will know in 2 weeks. There is so much going on in our lives right now. Amanda, losing our children is the most painful loss anyone can every experience. Not a single person knows the depth of the pain, the emptiness we feel but those of us who are in that situation. Please stay in touch with me and do follow up with Maura. I will keep you in my prayers.
Corinne, Olivia’s mom
Heya there Corinne, also Hello nice to meet you Maura Im Amanda (HI) I know that both of you will be reading this (so I hope you both don’t mind that im writing to you both together)… I just wanted to thank you both very much I don’t know how I stumbled onto this web site but thanks to you 2 women Im so very glad I did… It’s Horrible to say under the circumstances but im so glad that I’ve found the 2 of you… I don’t feel so alone anymore… if you 2 have given me anything it is that im not going crazy which before I met you both I thought I was well on my way to a padded cell if you can understand that, which Im very sure you both can, that’s what I love so much you 2 really understand how it is I fell because I guess that you also feel the same as I do and in some strange way that gives me comfort (plz don’t take that the wrong way)… Corinne I just wanted to firstly say to you that I am so sorry for what is happening with your son I can’t imagine how devastating your life must be as a mother right now all I can offer you is that im hear if you need someone to talk too ok anytime… And the (cancer) issues… I hope that everything will be ok for you with your test results… I’ll be thinking of you… I wanted to say that you 2 have been so kind to me and I feel very lucky to have met you both, it’s very hard to burden a close friend with what you go though every day because they don’t fully understand your pain as they haven’t lost anything so precious in life like the loss of a child for a mother the worst pain known… It’s finally comforting that I can speak for the first time and someone who fully gets my pain (I know this sounds bad but its nice) THANKYOU BOTH for the bottom of my heart… Maura thanks for you kind words and yes for sure I want to stay in touch with you with both of you if that is ok with you both… Corinne and Maura I have msn messenger if you both have that I would be very honoured if you would add me and I’d love to chat with you both on there if that’s ok my hotmail addy is didoamanda@hotmail.com Please take good care till we chat again and thankyou both very much for understanding and reassuring that im not going nuts… It’s always nice to make new friends specially with people who understand you fully… You’re both in my thoughts… xoxo
Amanda Teneale’s mum… Forever in my heart…