I have Ebsteins and was diagnosed  when I was 6, I am now 42. Ive got an active life and enjoy my life. I have my limits and no when to stop. I go to my hospital appointments every 12 months. I went to the heart hospital last year for the 1st time and had the ok and didn’t have a lot of changes. So was ment to go back to my local hospital this year. I got a phone call out the blue before xmas saying I had gone to board and they wanted to operate on me. Can any one tell me how the operation was and how long they were off there feet for. Its worrying me as I’m a single parent and have a son with ADHD and I no its going to affect him big time and I will have to send him to my parents as I have no family were I live. I haven’t seen the specialist yet about this as they want me to travel back to London and ive asked them if I can see them locally as they do a clinic at my locally hospital every 3 months.

 

My daughter was born on January 7, 2014 and diagnosed with EA on January 9. I am looking for advice on what should I expect. How do I even comprehend what is going on? This is suppose to be the happiest time of our lives. Don’t get me wrong, I am still very thankful for my daughter. I just want her to have a normal life.  I have read a lot of information since she was diagnosed but wanted to hear from parents that have gone through this. We met with a Pediatric Cardiologist Specialist from The University of Louisville on January 9. He  was very helpful and had a lot of information but those few day were somewhat of a blur. He said that my daughter would probably have to have surgery within the first or second year of her life.  My wife and I went from being the happiest we have ever been to getting are life turned upside down. He explained the oxygenated/de-oxygenated blood mix was small (and had apparently improved since she was last checked). He also told us that it is perfectly safe for a newborn’s pulse ox to drop down into the 70s without any harmful side effects.

We were released from the hospital this Saturday, January 11. The pediatric doctor told us to act as if there is nothing wrong with our daughter. How in the heck can we do that?   I am trying to stay strong for my wife and daughter but it is hard at times because just like a lot of you; I ask, why us? Any advice on how to comfort my wife? She is an emotional wreck  right now. She is scared to sleep or take her eyes off of Avalynn for the fear of something happing to our little princess. This coming up Friday we are meeting with another Pediatric Cardiologist Specialist from the University of Vanderbilt. What questions should I ask? I don’t want to miss anything.

From what I understand from the last specialist, the issue is with her right ventricle and tricuspid valve. Doctors were unable to diagnose our baby in the womb because her heart wasn’t enlarged and apparently, nothing abnormal was spotted. When the hospital took the baby out of our room and to the nursery to do the standard state testing on her hearing and heart rate/pulse ox/respirations, they noticed that her pulse ox was lower than normal. From this, she had some cyanosis; blue tint around her lips and in her feet and hands. This was when they notified us and explained that they would need to move her to the NICU to monitor her pulse ox. Anyone else’s EA experience similar to ours? Was your child’s particular “type” of EA spotted after birth and not during gestation?   Any help that anyone can give would be greatly appreciated.

Thanks,

Patrick

 

Introduction

29/01/14

Hi my name is Abbie,

I am 21 years old and have Ebsteins anomaly and a hole in my heart. I was lucky in that my condition was discovered by a midwife the day after I was born. My birth went well it wasn’t until the following morning that the midwife noticed that my lips were blue and called a doctor. Shortly afterwards I was rushed to Great Ormand Street Hospital where they realised what the problem was. I spent the following few weeks in the Special Care Baby Unit at Frimley Park Hospital. In the years that followed I visited Great Ormand Street twice a year for scans, echo’s, ecgs etc… And was told I was coping well no need for surgery every time.

Things changed in 2011 when I turned 19 and became a GUCH patient at the London Heart Hospital. I was told they thought they could improve things by surgery. In August 2011 I had open heart surgery performed by Dr Tsang, they repaired the valve using Cone technique and I also had a pacemaker fitted. I was very scared before hand but after the surgery I immediately noticed the difference. I didn’t struggle in the cold and didn’t get out of breath so easily. However recently I haven’t been feeling so good! The breathlessness has come back and my fingers are turning blue again in the cold. It would now seem that I need further surgery, they want to try and close the hole in my heart as they believe if they can successfully do this it will stop the problems.

I haven’t been given the date for my surgery yet as they want to do further tests. I seem to be stressing out a lot about this and have seen my doctor about anxiety and she pointed me towards this site. I am hoping that I may find some help, support or even offer support to others going through the same kind of thing.

Abbie.