This part of the forum is for those people who have Ebstein’s and who are thinking about having a baby, or who are pregnant.  It is hoped that those people with Ebstein’s who have been through this experience will provide a valuable resource for you.  For some, it may simply be the question ‘is it possible’?

unborn babies

11/12/08

With the increasingly good ultrasound techniques more parents may find out that their baby has Ebstein’s before it is born.  It is likely that until the baby is born the severity of the condition may not be known.  If you are in this situation you are probably terrified at what you have just heard.  In this part of the forum we hope that others who have had this experience will be able to support you and give you advice.

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.

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.

[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

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?

Is this normal with Ebstein’s that babies hate tummy time? He cries the whole time he is on his tummy. I only can deal with him crying for just a few minutes. I would love to know if anyone has had this experience. Does it hurt their chest? Is it too much “work” for them? His Ebstein’s isn’t severe but significant the cardiologist say. Anyone have any answers or any thoughts on this please email me or post on here! tommygirl_26201 [at] yahoo [dot] com

Thanks Melissa Ferrell

I recently ran across a site that said that one of the symptoms of EA was coughing. My almost 11 month old son has had a cough ever since he was born and was just wondering if this was true. Or is it just a coincedence? Just interested to hear of others that may have the “cough”.

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

 

Hello

 

I don’t know if anyone would be able to offer any advice. I’m 30 and I have suffered with EA since birth. I’ve miscarried several times. My doctor’s always say it is down to my EA. But I have never been investigated for this, until now. I got admitted to A&E last week and met a lovely gynaecologist who is going to help us and give me all the investigate me. We have recently got married and would love to start a family and I am just wondering if there is anyone out there who suffers from EA and has sustained a successful pregnancy. I’m after an information that people feel may help. I am hoping that the more information I can take to see my gynaecologist and cardiologist then the bigger help we have in our fight to have a family.

Thanks

 

Hi. My wife and I just found during her 20 week’s ultrasound that our baby has a severe case of Ebstein’s Anomaly. One surprising thing that the doctor mentioned and seems to be our only hope left is that the her blood flow is close to normal despite this severity.
We are seeking advise of those who have gone through this and especially if anyone can share if they had a similar case to ours on what to look out for and can share their story we would very much appreciate it. Thanks for reading and sharing.

 

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.