Hi! I’m Jamie and I just found this site. I am 26 years old and have Ebstein’s anomaly and Wolff-Parkinson-White syndrome. Most of my complications are more from the WPW but I would like to share anyway. I never knew I had anything wrong until my first SVT episode at age 12. Once they started I had one every couple of months. Sometimes my heart rate was around 340 beats per minute. I had an electrophysiology study when I was 16; after that they happened a lot less often- a year or more would go by without anything happening. When I was 22 I had my son with no heart-related complications during pregnancy or childbirth. Last week I had another SVT episode- slower than my usual ones at 206 beats per minute, but this time it hurt me more than ever before. I had a hard time breathing and just saying a few words was exhausting.

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Hi.  My 31 yr old son was born with EA.  As a result of closing the foramen with the amplatzer device he now has insomnia and a profuse sweat and leg cramps. Can anyone out there relate to this?

I lost my son Harrison on 04/02/2010 to EA. He was born sleeping, I was 27 weeks pregnant when he died. He was diagnosed at 21 weeks at Liverpool Womens Hospital (the staff there are fantastic).  Harrison had severe EA and pulmonary atresia and when he died his heart was so enlarged that it filled his chest. Losing him has been the hardest thing me and my husband have ever had to face but, we know that it was a blessing for Harrison to be born sleeping because it meant he wasn’t suffering. There was no genetic reason for his EA and as the doctors put it, it is a case of sheer bad luck but I am very concerned that if we ever tried for another child that the same thing could happen again. I have been reading all the comments people have made but haven’t found any which say you have gone on the have perfectly healthy babies after having a baby with EA.

Tia Elise, Our second child was born 12 days overdue on 29th December 2004 after a textbook pregnancy. I remember so well the midwifes words after she was born “She’s perfect”. We thought so too & her brother certainly did when he met her later that day.

In the early hours of the morning, after having fed her for the 4th time in just over 12 hours (she was a hungry baby), she seemed a little unsettled to me, I just felt something wasnt right.

I decided to take her to a midwife for reassurance. There was nothing apparent & she soon settled. After having talked for a while about delivery etc the midwife thought Tia maybe now looked a little cold & was flaring her nostrils slightly.

It was suggested her temperature be taken, this was a little low. They felt maybe she had a cold/viral infection & a paediatrician was called for a second opinion. He found she had a slight heart murmur, but I was told not to worry asthis was common in babies/young children and they are usually innocent (I knew this to be true as our older child was diagnosed with one at 6wks old).

I was offered a choice of keeping her with me on a heat pad & a touch of oxygen or to send her to S.C.B.U where they could investigate just what was going on & get her warm quicker. I opted for the latter & was told they would settle her in an incubator & come back for me.

I was asked if I wanted to call my husband, i decided to wait until we knew more. It was around 4.45am & i knew he would worry.

Around an hour later I was beginning to get restless, it didnt take this long to settle a baby in an incubator surely? Then i heard footsteps coming along the corridor, lots of them & hushed voices. Instinctively I knew something was wrong.

Two doctors & a midwife came to me, the male doctor began to speak. They had some bad news about my daughter. He took my hand as he said “its the worst possible news, Im so sorry”.  That was the moment my world fell apart.

They said they’d had no idea she was so seriously ill, she showed no signs, her heart had failed & they’d tried to resucitate. She was just under 15 hours old.

We had no choice, a post mortem had to be performed. It showed that Tia was taken from us by Ebsteins. Its something I will struggle with for the rest of my life. We were told the coroner despite his years of experience had never ever seen it & had to search through books in order to give what he found a name. How then can I fully believe that she would of been inoperable? How can someone who had never seen Ebsteins  say there would of been no hope? Maybe, if Ebsteins had been detected in utero she would of had a chance at life.. We will never know.

The ignorance here in the U.K is so very wrong, we were told Ebsteins is so rare, it affects so few people that so little was known & no research was likely. I know of several other families devastated by Ebsteins & it doesnt help any to be told were the minority.

 

[apologies – needed to shorten the long title – Ed]
hi, I am the Mother of a child who was diagnosed with Ebsteins at Great Ormond Street 27 years ago.

Hi, Nattikins here mother of 27 year old Laura who has Ebsteins, Wolff Parkinson, narrow pulmonary artery.  She was diagnosed at Great Ormond Street the day after her birth when at the “check” they heard a funny heart sound – they didn’t know what it was so sent her, with a police escort, up the M1 to London.  She was sent back 3 days later with a diagnosis and an appointment to attend at GOS.  That’s where her diagnosis was explained to us and we were told by our GP when we asked for a prognosis that “she could not run round the playground or she could not run a 4 minute mile” it would just be wait and see.  Anyway she was very well throughout her childhood and didn’t need any medication or interventions (apart from developing Migraine at 7).  At 20 she started to have rapid heart beat due to the extra electrical pulse in her heart and she was admitted to The Heart Hospital in London for a “simple, quick ablation to put it right”.  Unfortunately ablating this extra pulse put her into complete heart block and a pacemaker was installed.  She found this very traumatic and hard to deal with, particularly when she went for checks of the pacemaker and felt they were able to control her heart with an external magnet but she has just about got over this.  However some 6 months ago she experienced a “black dot” in her right eye – she went to the Optician and her Doctor who told her to go to the Local Eye Dept of the Hospital which she did – she was told her vision field was affected but to go back in a week.  She duly went back and was told it was still affected and was given a leaflet on Detached Retina, they also kept asking to give her an MRI scan which of course she had to explain to all of them that she could not have because of the pacemaker.  They therefore decided to make an appt to do a CT Scan.  Luckily, oh so luckily, my elder Daughter is a Doctor (currently a Registrar Radiologist) and when I told her the situation she immediately said that I should contact our Heart Specialist as it could be a clot from the hole in her heart.  I did so immediately and she was seen in January this year.  He was most concerned and arranged for a “Contrast/Bubble Test” and a letter was written to the Eye Consultant regarding his concerns and asking him to see her before her next heart appointment on 17 March.  She duly went for the bubble test and was told by the Physician who carried it out that they had never had a more positive result and it was also showing bleeps some 10 minutes after the injection of the solution – the Physician was concerned and contaced her Heart Specialist immediately.  She finally managed to get an appt to see someone at the Eye Department on the 16th March – they kept offering her appts in ~April and May, and all that was done was yet another vision test when she was told that her sight in her right eye was 60% compared to 77% and 67% on previous occasions.  She was not seen by the Consultant and was just told she had a “defective retina”.

We duly saw the Heart Specialist on the 17th when it was decided she needs to have an operation to close the hole in her heart as soon as possible as it is obviously throwing off clots and presumably has resulted in retinal emobolisms – this means she won’t recover the loss of sight and is very lucky really that they ended up in her eye and not giving her a stroke in her brain – however we still have no diagnosis from an Eye Consultant.  I am concerned and so are my daughters about the hole being closed because of how Laura will cope and if her heart will enlarge too much but they have said they will try on the table and see how it affects her.  She has a 3 year old daughter so is very concerned as is understable.

I am just so angry without my elder daughter having had medical training and suggesting that I contact the Heart Consultant this would still be going on as neither Laura nor myself would have necessarily mentioned this eye problem to him at her appointment – not putting the heart and eye together.  I, myself, had a stroke at 46 so know the devastation this can cause.  I just feel totally let down by the Eye Department and wonder if anyone else has had such an apalling experience.

I also wonder if  any other adult has had to have their hole closed due to the leakage of blood and clots and how they are coping?

Thanks for reading