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Long-QT Syndrome Stories
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MISDIAGNOSED
-By Victoria-

It was 4.45 am in the morning when my phone rang and my son in law said he could not wake up my daughter Melissa.  I asked him if he called 911 and he said yes.  I said I am on my way.  Thinking that it was going to be like in the past when she was passing out at home and when I would get there they would have her hooked up to oxygen and everything would be ok, but it was the worse night mare of my life.  September 1, 2002, this day changed my life forever.  When I ran through the door of her home they had her lying on the floor and were doing CPR.  I screamed at her to breathe and they kicked me out of the house.  I waited outside the door yelling please Melissa breath don‘t leave me.  I knew then it was not good but never thought that I would lose my only child.  They finally came out and I asked them if they had a pulse and they said no mam, I am sorry.  I knew then that my daughter was gone. 

After getting to the hospital the doctor came out and said if we do any more we are talking about brain damage.  I knew my daughter would not want that and I told them to leave her alone.  But when I got in the room they continued to do CPR and the doctor told me to look at the screen and then he said watch and they stopped and she went flat line.  He then told me I know it may seem brutal but some people need to see this it is not like on TV.  I could not believe this Doctor would be so brutal.  My daughter lay there lifeless with her arm hanging off the bed and her eyes part way open.  I closed her eyes and held her hand.  I watch her skin change the colors of death.   I told the doctor that she had a seizure and that she did this before and he got in my face and said her heart stopped she didn't have a seizure and he then walked away without saying he was sorry for our loss.  It was 4 days shi of her 23rd birthday.  On that day I lost my daughter my best friend and the right to be a mother.   I thought why and all I could think of is the doctors didn’t listen to me. If they would have only listened to me 5 years prior to this when she was having all the symptoms and also I was told I had epilepsy.

She was buried on September 4th 2002, the day before her 23rd birthday. The autopsy report finally came back after a couple of months.   It read cardiac arrest due to a seizure, but they couldn’t say why.  Melissa was on a drug for an infection called Ketnocozanole and she told the doctor it was making her dizzy and he said to take it 10 more days to give it a chance and 4 days later she died.  I could not except the autopsy report, so I did research on my own. I had to know why Melissa died.  I brought her records and mine home and in a 1/2 hour I knew why my daughter died. We both passed out when answering a phone while sleeping or when startled while sleeping. I knew there had to be more to her death and it had to do something with me also.  I thought she had epilepsy like I had been told for years, but when I came to our  EKGs, they both read abnormal EKG with a prolonged QT.  We were never told about them.

I then went to the Internet and typed in this "prolonged QT" and every symptom fit my daughter and I, but one more fit Melissa and that was death.  I then called my doctor and told him what I had found and he sent me to a cardiologist and then they sent me to a specialist in Madison, Wisconsin, where this doctor confirmed what I had unfolded.   Finding out why my daughter died felt like losing her all over again but I finally new why she died.  They wanted to put a pacemaker in me, but at the time I said no. I was angry that I lived when my daughter should have been given the same chance. I was always told I had epilepsy for 20 years but they where so wrong.  I was on Phenobarbital for something I didn’t even have.  I had long QT that in my book is much worse then epilepsy.  Then August of 2003, I went into cardiac arrest during my sleep and was taken to the hospital by ambulance.  They didn’t know much about long QT and they sent me home with a QTc reading of 670 that should be less then 450 in women.  The doctor said there is nothing we can do for her.  I went home living minute by minute. 

That following Friday I woke up again coming out of a cardiac arrest.  When the paramedics came they got an abnormal pulse.  They admitted me to the hospital and kept me and the next day I fell asleep and went into torsades which, if you are not shocked in a timely manner, death can be the results as it was for my daughter. My pulse rate was 278 and I was in vfib for 3 minutes.  Never being shocked my heart came out on it’s own.  I was then taken to ICU until I could be transferred to Madison to have surgery. While I was in ICU I still educated the staff there in the hospital because no one was up on this long QT.  I had nurses coming to me for packets on this condition.  I thought if I am going to die I want them to be educated so when the next person comes in they will know what to do. 

I was then transferred up to Madison on September 2nd to have surgery.   On September 3rd I underwent surgery to have a pacemaker/defibrillator put in.  When my doctor came in to see me before surgery he was not aware of what I had gone through that week.  He thought I had just made my decision to have the surgery done.  When I showed him the torsades readout he said that I should have been shocked and should not be alive.  Many of the doctors there in Madison called me the walking miracle and that I was misdiagnosed with epilepsy for 20 years.

They put the pacemaker in and I went home on my daughter’s birthday.  I was going home with a machine that continues to remind me of why my daughter died.  My life now is to help others in preventing families from losing a loved one to Long QT.   My grandma had it and my mom and sister so far.  What is sad is I diagonsed this myself after my daughter died.  My blood is now up at Mayo Clinic and I sent my daughters tissues there also.

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A LQTS STORY FROM AUSTRALIA
-By Julie Foley-

Before I write this story about my family, and how we have been affected with the long QT syndrome (LQTS), I just want to say that, we had never heard of this heart disorder before finding out that our famliy was effected with it. We thought we were all very fit and healthy (apart from our children fainting) which we were told over and over again, that it was nothing to be concerned about,as they would probably grow out of it.

We are the parents of 5 children, we have three sons and two daughters. Our eldest son is 15yrs old, he is the only one of our children who is clear of long QT syndrome. Our other 2 sons, aged 11yrs and 9yrs, both have LQTS, as do our 2 daughters, aged 7yrs, and 5yrs. We found out about LQTS just over 2 years ago when our daughter Claire was diagnosed to have this condition. She had been fainting for some time. We had taken her to the doctors to find out why, but no one seemed to know. At first we were told that she was having febrile convulsions. She was only two at the time. The doctor said her body was overheating, and so her system was shutting down in order to cool down, it was nothing to be concerned about, and she would outgrow it. However, Claire continued to faint at different times, for different reason. The next time she fainted we were told she had a virus and then it was for attention, because we have 5 children. The doctor thought she wasn't getting enough attention, and so fainted in order to be taken notice of.

I think he thought I was making it up for some reason. As time went by, we seemed to be spending more and more time at the doctors, but none could find out why Claire was fainting. One time we were out shopping when she wanted a drink of water, but she wanted to come home for it, as we live not too far from the shopping centre. We came home to give her a drink, as soon as we came inside, she ran for the tap, had a drink and said she was going to faint again. She did, I cought her in my arms as she collapsed. We called the ambulance, they took her to hospital and observed her overnight. As she was ok in hospital, we were sent back home, being told to take her back if it happened again.

When she fainted again, she was taken back to hospital for tests for epilepsy, they came back clear,while in hospital,a radio announcer was handing out gifts to the children in hospital, as it was christmas time,Claire was given a Barbie doll with rainbow hair and gel,she was so excited that she fainted in hospital, (this was the first time she had fainted in front of anyone else) so the doctors seemed to believe now that her fainting spells were real, and not attention seeking acts. they did more tests for epilepsy. Again we were sent home and told to keep an eye on her, as nothing could still be found as to why she was fainting. Claire went a while without fainting, so we thought perhaps she had stopped.

Up until mothers day 96, she felt unwell for a few days, but couldn't say why,she was more clingy than usual,and wanted to be nearby a lot more.She said her head felt funny before fainting. Our second son Alex had began to have nightmares, after he had a bad dream he would tell us about it, then faint, we called  a doctor to the house,he said he had a vivid imagination and would be alright, it was just part of growing up. When he did it again, we were scared as he went all clammy and white,so we took him to the doctors as he took a while to come around ,we were told he was suffering night terrors.

We really wanted to know what was happening to our children. As Claire would hold her head prior to fainting, we wondered if it was related to the fainting in any way, so we asked for a refferral to a Neurologist, to try and find out. The neurologist suggested getting her heart checked out,we were sure it wouldn't be her heart as she was only 5yrs old at the time (how wrong can you be?). Any way while waiting for a refferral to a heart specialist, our son Michael 7yrs old, had been found at school, in the playground unconcious. No one saw what happened, and so it was presumed that he must have fallen from the monkey bars nearby.

We took him to hospital for a Cat Scan, to make sure he was ok. The doctor said all was clear, he only had low blood pressure, which had caused him to faint, and so he would continue to faint every now and then to recharge his batteries. No need to worry. We were becoming suspicious, three of our children fainting, and finding no reason, it didn't seem right, it all had to be related somewhere. Children just don't faint without reason, not over and over again,we had to find out why.

Two weeks after Michael was found unconcious, Claire fainted again, this time she had gone blue, her lips were black, as though she had boot polish painted on, she was taking longer to wake up. We rushed to the hospital and asked to have her heart checked, we were refused, we were told even though all the previous testing for epilepsy was clear. That because she was still fainting, she must have some other form of epilepsy, that had been missed, so wanted to check for it again, I insisted on someone doing an E.C.G.to check her heart,after mentioning that it had been suggested to us, to have her heart checked,and that the neurologist was from the same hospital we did  eventually have an E.C.G. done on Claire,and that's when we were told, that what was causing Claire to faint was her heart,we at first felt relieved that we now knew  why she was fainting, but at that stage,had no idea how serious long QT syndrome was.

We were told that the Cardiologist would call us in the morning, to explain to us what needed to be done, to treat Claire. All we were told at first is that it could be nasty. So the next morning when the telephone rang, I answered it in anticipation, I was told that Claire was a candidate for a pacemaker, and that long QT syndrome was genetic. And so the whole family needed to be tested, I was asked if anyone else had fainted, I immediately thought about Alex and Michael. We all went in for testing, Jeff our eldest was clear, Alex had LQTS, Michael had LQTS, Claire we knew had LQTS, and Emma we weren't sure about, as she had not fainted.

We hoped she might have been clear, but she needed further testing, and has LQTS also, I also have LQTS, I am borderline. Alex, Michael, and Claire all had their pacemakers fitted within days of each other, all are taking beta blocker medication. Emma is taking beta blockers too, to hopefully  regulate her heartbeat, and so help stop her from fainting. All have been very well since being treated for LQTS.

There are other family members being treated for long QT syndrome, since we found out about it. They have been tested, and would otherwise have not known about it. We are really lucky to have found out when we did, I am sure that time was running out. It's still hard to think how we were shrugged off by so many doctors, with something so serious, not enough doctors know of, or have heard of long QT syndrome, let alone know how to treat it. We need to get the public and medical profession to learn about long QT syndrome, I think because long QT syndrome is supposed to be a rare heart condition, that most doctors think they wont come across it, and so choose to ignore that it is out there. But more and more people are finding out about it. We need to make people aware of it, in order to help save lives.

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YELLOW IS MY FAVOURITE COLOR
-By Maryann Anglim-

While Kara was in the hospital with her newfound diagnosis of Long QT syndome, it was a remarkable coincidence that the genetic markers for some forms of LQT were found. So, on Columbus Day of 1995, our family all had our blood drawn to be sent to Texas and Utah for genetic screening. We were not considered a high priority because our family had so few problems attributable to LQT, but eventually our blood did get studied although the reports are still nebulous. The suspicion is that our defect is on chromosome 7, but the report is not definitive at this moment. The general public sees DNA testing as factual, definitive and easy...I have come to realize that is not the case. It is costly and timely and often “the needle in the haystack” idiom readily applies. I am sure that this will change as technology improves, but at the moment, “inconclusive” is the word that describes our genetic studies.

And how is Kara doing today? Today Kara’s LQT is well-controlled with beta-blockers and her combination pacemaker/defibrillator. Neurologically, she is still a handicapped child, but each day a little less than the day before. Her biggest problem is her fine motor skills, but even those keep improving. She cannot button her clothes and she cannot write very well, but she can hike Tumbledown Mountain and take a four mile walk at the beach. Cognitively, she also continues to make progress and some of the things she says are so funny and smart. The other day, she was out the door on the way to school and she said to me, “I have to wear my sunglasses today.” “Yes,” I said as I helped her position them, “that is a good idea because it is so sunny and bright.” “I know,” she said, “I don’t want to burn my retinas.” Another day, she was telling me a story of an adventure that she had that afternoon and I commented that I liked her interesting story and was glad she told it to me. “Mom,” she said, “we just had a dialogue, you know.” Her math is at about an eighth grade level, but her poetry surpasses anything I could ever do.

But, our struggles are not over.  I recently gave a talk to a group of nurse/educators who were interested in genetics and involved in setting up a curriculum to educate nurses in genetic counseling.   I know that there are logistical and legal, societal and ethical problems that I don’t fully understand and that maybe many of my suggestions are not feasible due to those constraints, but I did tell them what I wish for as the perfect model.

My wish is that there be some sort of genetics library/foundation where, when you were diagnosed with a specific genetic disorder, you could go. You would say, “LQT” and they would say, “ROOM 3, please.” Then in that room, you would meet someone who was an expert on LQT and they would say, “Bring in your children,” and then they would counsel them on child-bearing and life-style choices. And your children would nod wisely and listen. Then they would say, “Bring me a list of your family members and their addresses,” and then they would mail them all packets about LQT. And then your family members would say, “Oh...how wise,” and all get the appropriate tests. Then they would say, “Here is your packet” and in it would be everything you need to know about LQT in understandable terms, all the books written about LQT, all the support groups, the internet connections, the supporting organizations and the treating physicians. And then they would bring you a cup of cappuccino with cocoa sprinkled on the top and say, “And how are you doing? Would a week in Hawaii at our expense help you?” Well...OK...so that is pushing it a little. But the fact remains that we families with genetic disabilities are needy families who require education and support at every turn. Most of the information and support that I have found for LQT families, I have stumbled upon, often through connections that Dr. Allan and I have made through our book, KARA MIA, the story of sudden loss and slow recovery in a teenager with Long QT syndrome.  It would be so helpful for parents if the information was more centralized and easily available.

The future of genetics seems so bright to me. It seems to me that more and more discoveries will be made and more and more treatments will become possible for families such as ours. In my life, I try to keep one foot in reality and one foot in hope, and genetics research is part of that hope.

Even though our lives have been so changed by this genetic problem, what we have learned is that our family life can be very rich, even though it has turned out to be so different than we planned. Did you ever listen to the song by James Taylor called “Yellow and Rose”? In his song, he sings about a vast and unknown land, about strangers on the sand, about how everything changed from being green and blue to being yellow and rose.

In that song, I hear the story of our family. Everything did change for our family. Everything that was green and blue became yellow and rose. But, I have learned that yellow and rose are beautiful colors and the interesting thing is that yellow has always been my favorite color.

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WHERE HAVE ALL THE COWBOYS GONE?
-by Maryann Anglim-

Maryann Anglim on a summer day

On April 7, 1995, my 14 year old daughter, Kara, collapsed of a cardiac arrest at a junior high school track practice. She was successfully resuscitated by the paramedics on the track, but not before minutes of anoxia had left her with brain damage. The diagnosis eventually became Long QT syndrome and her hospitalization lasted four months with that time being divided among the special care unit, the cardiology unit, and the pediatric unit where she was a rehab patient. The whole time that Kara was in the hospital, I kept telling everyone that I was going to write a book about this syndrome and our family’s experience. "Yeah right, Maryann," people would say to me as they rolled their eyes and thought, "Well, let us allow this woman her delusion." I noticed and watched everything and kept it all in my head and eventually I did write a book with Walter Allan, M.D., Kara’s pediatric neurologist. The book, KARA MIA, the story of sudden loss and slow recovery in a teenager with Long QT syndrome is the result of our collaboration. It includes current medical facts about Long QT syndrome as well as a personal account of our family dealing with all of the many ramifications of this cardiac condition.

Kara (left) and her sister Guerin

Over the past year, I have done a few interviews for television and the newspaper and the most commonly asked question is Why did you write this book? The first time I was asked that question, I was on television and I quickly had to scramble for an answer. I chose the most socially expedient answer as I said, "to help spread the word of Long QT syndrome." It wasn’t an untrue answer, but it wasn’t the whole truth either.

The next time I was asked that same question, I was more prepared for it and my answer had a second facet: "to help spread the word of Long QT syndrome and also to help me process all that had happened to our family." Again, it wasn’t untrue, but it still wasn’t the whole truth. I still didn’t know exactly why I had written KARA MIA.

I asked my husband, Tom, "Why do you think that I wrote this book?" "Because you need constant adulation and praise and you have to be the center of attention at all times," he answered. Despite the fact that he may be correct, he was no help. I asked Walt, my co-author, "Do you know why we wrote this book?" We developed an answer suitable for the media, but the driving force behind the writing of KARA MIA was still a mystery to me.

But this past summer I finally solved the mystery thanks to my 12 year old niece, Kelly, who was visiting us for a week. She loved the CD player in my car, put all her CD’s in the holder and played them on all of our drives. We listened to Fiona Apple, the Spice Girls and Jewel, but her favorite was Paula Cole, particularly the song "Where Have All The Cowboys Gone?" Kelly quickly figured out all of the 40 buttons on my dashboard with particular skill attached to the CD buttons. Over and over we listened to that song until I was pretty sure that I could be a back-up singer for Paula Cole.

I couldn’t escape the dark lyrics. I was a captive audience. "Oh, this song is so sad," I thought, as Paula Cole sang the lament of her joyless life and how she was hoping that cowboys do exist and that one, preferably John Wayne, would come to save her from her miserable day-to-day existence. She was hoping for someone to rescue her and turn her life into a fairy tale with a happy ending.

After listening to this song approximately 100 times, I finally and suddenly realized why KARA MIA had to be written. I wrote my part of KARA MIA because it was my way of writing a happy ending to our story. I realized that I had to be my own John Wayne - that I had to write my own fairy tale and happy ending and that cowboys do still indeed exist. And so here are the final paragraphs of our book:

The summer before Kara suffered her cardiac arrest was the summer between her 7th and 8th grade years at school. Kara had been a busy babysitter, popular with both the parents and the children. I always thought that when Kara grew up she would be a kindergarten teacher because she loves children so much. But that summer, she had been offered a spectacular job for two weeks as a mother’s helper for an unusual family.

The family consists of a mother who is a psychiatrist and her 6 children. I called them “The Rainbow Family” because five of the six children were adopted and they ranged in color from white to black with every shade in between. Normally, they had a nanny who helped with the day-to-day family routines, but during this two week vacation at the beach, the nanny was also on vacation and Kara was hired as the mother’s helper. Kara loved this family. She loved the mother, Kate, and she loved each of the children. She always told me that when she grew up, she was going to have a family exactly the same as Kate’s.

And then Kara collapsed. And then we realized that she had Long QT syndrome. And then we realized that it was a genetic problem and that she should never have children. One day, Kara and I were sitting on the sofa together watching a show about babies and I said to her, in a tentative manner, not knowing what response I would receive, “Kara, do you know that you should never have children?” “Yes,” she said, “I know.” “Do you know why?” I asked her. “Yes,” she said, “because my defibrillator will hurt them.” “No,” I said, “it is not because of your defibrillator. It is because they will inherit the same heart problem that you have. Does that make you feel bad?” “No,” she said with her sweet smile, “I will just have a family the same as Kate’s.” So that is the final story I will leave with you. That is the story that will tell you that we are all going to be just fine.

So, you see, now when anyone asks me, “Why did you write KARA MIA?” I know the simple answer. It is because I had to write a happy ending to our story.

Maryann Anglim R.N., B.S.N. lives in Bath, Maine, with her husband and daughters. A graduate of Loyola University of Chicago, she works as an operating room nurse.

Also see: Long-QT Syndrome Message Board - Survivor's Stories

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