newly diagnosed

08/12/08

If you or your child/relative or friend has just been diagnosed with Ebstein’s you may feel bewildered, anxious and probably know very little about this condition. Please use this section of the forum to ask for help and support from others who are a little further down the road (but who can still remember what it feels like to stand where you are now).

My Baby Girl

23/07/09

My babygirl, Ellie, was diagnosed with Ebstein’s in utero about 3 days before her due date. She was born via emergency c-section. She spent a few days in the Neonatal Intensive Care Unit for monitoring and an eating issue. Now, at almost 10 months, she is just like any other baby. Her cardiologist prescribed her Enalapril. I have done some reading up on the medicine and everything looks good. What I was wondering is if we should limit her sodium and cholesteral intake. Any information would be helpful.

Help for Rino

01/07/10

Hi,

My name is Emma and I have a small school on the island of Koh Samui in Thailand.  One of my students, a little boy called Rino, has just been (after literally years of doctors telling his family he would grow out of it) diagnosed with Ebsteins.  He saw a specialist in Bangkok who told him he will need surgery within a year.  His parents don’t have any insurance and the operation will cost somewhere in the region of 2 million baht, or 40,000 pounds.  We are setting up a website for him and are starting to organize fund raising events.  The reason I am putting this post up here is to ask for ideas and help.  He is an amazing little boy and I have come to love him very much over the last five years that I have known him.  He hasn’t had the easiest of lives and it breaks my heart to have to see him now go through this as well.  Any ideas will be gratefully received and when we have his blog set up I’ll post details of that too.

Thank you, Emma

 

I am a first time Mum, and we were told our baby girl had Ebsteins the day before she was born.  Although we actually had had an abnormal NT at 12 weeks, and went ahead with an amnio which was normal.  We proceeded with a detailed u/s and echo at 20 weeks and were told that our baby was completely healthy.  We were soo relieved!!  It wasn’t until I went overdue and had a routine  u/s to check the fluid was it noticed that she had a heart defect.  We were devastated, and shocked wondering how it could have been missed.  Once it was diagnosed, I was induced so that she wouldn’t be born over the weekend, to maximize the resources available for her.  After a very quick labour, Sydney was born screaming away.  She needed no immediate interventions, and I got to cuddle her before the nursery team took her to the PICU for observation.  She spent a few days in the PICU, and needed no intervention besides oxygen as a pulmonary vasodilator.  We then spent a few days on the cardiology ward in the children’s hospital before being discharged home.  She as acted like a regular healthy baby!!!  She is now two months old and doing great.  She weighed 7 lbs when she was born, and has since doubled her birthweight.  I hope and pray that she stays healthy (and happy!) her whole life, and that more research is done regarding Ebsteins Anomaly.

HELP

27/12/10

We were just diagnosed yesterday. My daughter in law is approx 22 weeks with our first grandchild.  she has an appointment with a cardiologist  on Friday.  so many questions?????  I’ve been on the internet non stop  and this site is the only one I can  understand.  Our grand daughter not only has  ebstiens anomaly there is a possible club foot, extra fluid on the brain and the doctor wants to check chromosomes.  Are these other symptoms or abnormalities apart of ebstiens anomaly? What questions should we ask the cardiologist?

I am looking for some advice as feel very unsure what the future holds! Georgina is 3yrs and was diagnosed in Feb after many trips to hospital. She has been a very sick child and is now under the care of Great Ormond Street. she is seen every 8weeks and things have started to worsen! she has now developed an irregular heart beat. She has been put on medication but I can’t get her to take it (even tried hiding in food). She is very anxious about hospitals and I’am finding it a real battle to do the best for her. Her consultant has said he wants her to take the medication to buy us time before they do the valve repair but he is now worried her heart may be tiring as she has prollonged episods of fast heart rate which they are trying to controll
I was just looking for some who has experienced any of the above and can offer me some help.
Alex x

What to Do?

14/07/11

My wife and I are having our first babies (twins). Last week at the 21 week ultrasound we found out that Baby A has EA. On Friday we went to a pediatric cardiologist for more test. We were informed that it is moderate at this point and that the heart size is about 30% larger then it should be at this point and will just get worse. The doctor’s only give it 10% chance of living after birth. If it goes into heart failure anytime before birth it would then effect Baby B. doctors seem to be thinking that termination is the best option. I have no clue how we are supposed to make this decision.

If anyone has any advice I would love to hear it.

 

Hi all, we are in New Zealand and my 4 year old son has been recently diagnosed with mild EA. I am trying to learn all we can about this and find any others in a similar situation but as it appears to be so rare there aren’t many out there who I can talk to! Patrick is under supervision of the cardiologists here and he is coping quite well so far. But this is all so new and I spend an awful lot of time worrying about him. He can still run around fairly well but tires easily and I have to work hard to get enough food into him sometimes (unless is chocolate of course!). Anyway, just wondering if there are any others in NZ?

 

Hi, our baby boy has just been diagnosed with Ebstein’s.  We live in Sydney, Australia. I had taken him to the paeditrician for reflux as he was very unsettled and upset after feeding. He was also only sleeping very short amounts of time. The paed picked up a galloping heartbeat and so after going for investigation he was diagnosed with EA at 8 weeks. He is now 10 weeks.

The hopsital here hasnt given us really any answers regarding his future and what to expect – they just say that they dont know at this stage and we will have to just monitor him for now. Im really struggling with this and feel so frightened and sad. They have said that he is at the severe end and that its likely he will require help. At this point i see the paeditrician once a week and a hospital check up once a month.

Thats all we have to go on for now which doesnt feel enough.

Any one offer any advice/reassurance/tips…..

Thanks x

 

Looking for help

13/08/12

My nephew was born on July 27th, 2021 and started having symptoms after the first 12 hours and later was diagnosed with Ebstein’s anomaly. The course of his situation has not improved, however the doctors tell us we have to wait until he is one month old to attempt surgery. My nephew is in Bogota, Colombia. Does anybody know of a good cardiac surgeon in Colombia that could see my nephew’s case? The doctors also have told my sister that the baby is not stable enough to be transported to another facility but we wouls like a second opinion.

 

My daughter Florence has Ebstein’s Anomaly, she was diagnosed at 3 months old after I took her to hospital because she had a cough that got gradually worse and she was very weezy. They told me that she had bronchiolitis but they kept her in because her oxygen saturation levels (SATS) were a considerable amount lower than they should have been. As she got over her illness in hospital they remained concerned because her SATS were not improving. She was then transferred to the Birmingham Children’s Hospital for further tests and it was there that she was diagnosed with Ebstein’s Anomaly.

Since her diagnosis she has been monitored at Birmingham Children’s Hospital every 4 months. In the very first appointment we was told her condition was mild although in the last appointment they told us that her condition was severe. They also told us in the last appointment that they are looking at doing keyhole surgery to repair the ASD (Atrial septal defect). They also told us that at some stage of her life she would need open heart surgery to correct the displaced and perforated valve.

We wanted to know more information about the cone procedure which we found on the website of Boston Children’s Hospital. We have since found more information on this website about the cone procedure being performed at Bristol Children’s Hospital and I was wondering if anyone has any more information on this procedure? We would also like to know if this procedure is available in any other hospitals in the UK?

Thank You

 

Our story so far

24/04/13

Leanne (wife) went in to labour early hours Wednesday 27/03/13, every thing going to plan.

At 9.45 am we had a little girl by water birth, we named her Minnie, no issues all going well, leanne asked if we would be able to leave that day rather than stay one night and the midwife told us as long as everything’s fine they could turn us round in 6 hours (Harrogate hospital).

We had a lovely time with Minnie and she was feeding and all looked well and we were packed cleaned and ready to leave, when the paediatric nurse  came to check her and then told us she could hear a small heart murmur, probably nothing to worry about.

they took her to the special care unit where things started to go wrong, shlas tarted going blue and there was a big panic, wires, tubes, monitors all came in the room and then she turned back pink.

A cardiologist came to take a look, did some checks made some phone calls and then told us that Minnie need to go to Leeds general hospital NOW, so I asked why and he just said she has a very serious heart condition.

On arrival at the LGI she was already having an echocardiagram, the when finished the cardiologisstat us down and told us Minnie has ebsteins anomoly and that is was very rare.

In harrogate her stats were in the low 60s they gave her prostin to get it up, in Leeds they took her off the prostin and told us they needed to see where she was by her self, as her pulanary pressure dropped and 4 days in HDU passed, her stats were stable at high 80s.

6 days after she was born they have let us home, told us what to look out for and basically see how she goes, I asked them how bad her EB is and they said that her valve was very low down and was leaking quite badly ( so not good ) but they don’t want to see her for 4 weeks .

So me and Leanne are very scared and don’t know what to do, they seem to be saying take her home and wait for her to get worse And then we will see what to do about it as every EB is different ????

is this right???

do we do nothing????

or do we act now?????

and if so what would be our next course of action??

thanks for reading

 

Lee Johnson

 

 

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

 

Hi,

My unborn daughter has been diagnosed with EA, My wife will deliver in 5 weeks ( 29th of April ) at Bristol Hospital, UK.

The baby will need either open heart surgery for a blalock-Taussig Shunt to be placed or key hole surgery for puncture and ballon catheter to open valve  due to pulmonary atresia.

Does anyone in this site have experience with these procedures? Did you have a natural birth? did you get induced or opted for caesarian section?

We are seing the consultant in a couple of weeks. What questions should we be asking?

Thank you for your replies and apologies for the blunt post. My brain has overloaded.