Hello,

My Daughter “Hannah” turned 5 in February.  We were diagnosed with Ebsteins at our 20 week pregnancy Scan.  We were recommended to terminate our pregnancy.  Hannah has mild Ebsteins with moderate tricuspid valve regurgitation.  Hannah goes to the cardiologist several times a year and is about to go again to have a stress test done.  She is just like any other normal 5 yr old but does tire quite easily.  I know it can be daunting awaiting the birth of a bub not knowing the outcome.  Hannah was taken straight away to the ICU and given a drug to keep the shunt open while her oxygen levels stabilised.  She was fine to move to the ward after 6 days.  So far she has not had to have any surgery but this may change in the future.  The cardiologist has advised us not to let her participate in any competitve sports which is a big challenge as Hannah strives to be the best at everything she does.

At the end of the day she is just a normal kid.  We tell her all the time the truth about her condition and she knows her body better than anyone else does.  She knows when she gets palputations to stop and chill out for a while.  I fully believe in telling kids all about their illnesses so they can learn what is important.

We feel lucky to have Hannah.  There are many other conditions out there that would have taken her from this world by now.

Have a nice day.

Gaylene from Oz.

My name is Darlene Staimpel and my son John was born with Ebstein’s Anomaly.  I had no idea until he was born (March 2005).  That was one of the scariest days of my life.  I gave birth and then the nurses took him.  I never saw him.  Everyone left me in the room by myself while they were trying to figure out what was wrong.  After 20 minutes my husband walked in my room and said that “something” was wrong and they have literally every doctor and nurse in the hospital helping him.  They stuck him over 100 times that day just to get an iv started.  A larger hospital’s transfer team came to take him.  I got to touch his hand and foot but never saw his face or held him until the next day.  I had to stay in one hospital while my newborn baby, so sick, was in another hospital 45 miles away. I found out later that night that the transfer team had to revive him twice. 

Dr Chris Knott-Craig

The doctors ran several tests and diagnosed him with Ebsteins.  The hospital released me the next morning to be with John.  I remember seeing him for the first time and I was so scared. He was so blue he was almost black.  We spoke to his cardiologist and he said that they would have to transfer him to yet another hospital because they could not give him the proper treatment.  The hospital team Lear jetted him to a larger hospital where he stayed 3 days.  We were told again that they could not help him.  The staff, my husband, myself, and our family and friends made calls to every hospital in the US and NO ONE could or would help.  By the grace of GOD we found the only surgeon in the WORLD that has perfected Ebstein’s Anomaly in newborns.  He agreed to take our son if he could make the flight.  John had been intubated and was now grey and pretty much lifeless. We flew 8 hours to find Dr. Christopher Knott-Craig.  Our first meeting he explained that he wanted to wait until John was a month old before he could do the surgery. He said that he was way to sick and his survival rate would be less than 10%.  At this point John was in complete renal failure and heart failure. He also had a small brain bleed. Taking the advice of Dr. Knott-Craig we agreed to wait. 

The next morning Dr. Knott-Craig called us in and said tomorrow morning is the surgery, we have no choice.  This is his only chance for survival.  That was a hard day for myself and family.  Later that night, Dr. Knott-Craig said it would be a great idea to express our love to our son, make peace and say our goodbyes. That was the hardest thing I have ever done.  The next morning Dr. Knott-Craig performed the most AMAZING surgery on John.  He had made it off the by-pass and was doing great.  From that moment on, John never had a set back or hick-up.  He grew to become an extremely strong, smart, beautiful, tough and hyper 4 year old. Dr. Knott-Craig is now in Memphis, TN and I HIGHLY recommend him if anyone needs this procedure done.  Because of Dr. Knott-Craig and his skills, my son will need no future surgeries for Ebsteins.  HE IS CURED!!!! I would love to say to any parent going through this right now, I know what your going through.  I know the pain, heartache and deepen sadness and helplessness you feel. God will see you through as He did my son and my family. My email address is staimpeld <at> yahoo.com if anyone would like to talk.

Hi. My name is Miranda and I’m new to this site. I am 22 years old and have had two tricuspid valve replacements. Is there anybody else out there with more than one replacement?

[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

For all the people that have had open heart surgery for their Ebstein Anomaly… Were you a sick child?  Did you have alot of problems?  What made them do open heart surgery on you … I am just asking because I want to know what to look for in my son… I want to know all details of things so I know if I gotta get him in and be seen or if he is just normal… What are signs of things that I should watch and look for in my son? Please anyone who reads this please help me understand things that I need to know and watch for .. Oh yeah and I seen some post about the tummy time… My son also does not like tummy time at all .. So I do other things with him to help him learn he is 4months old and he can hold his head up he can sit on his own and when he is on his tummy he gets really mad and he pushes himself backwards … he loves to play when he is awake he is full of energy but he wears down really fast… but I heard that it is normal for him to be more tired then normal babies his age… Thanks for all the help and support…