‘mums’ and potential mums
11/12/08
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’?
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For a mum of a daughter with Ebstein’s the comment “I can’t wait to be a mummy” which comes while playing with dolls can have a heart wrenching effect. During my meeting with Florrie’s consultant I have asked the question about whether or not she will be able to have babies in the future and it brings the answer “it depends”. With the nature of this condition and with Florrie being so young I fully understand this answer but I would love to hear from anyone with Ebsteins who has been through pregnancy, or is pregnant or who has looked into the pros and cons of pregnancy. A view based around lived-experience rather than theoretical discussions is what I would be really interested in.
Thanks, Caroline
Caroline
Comment by caroline — December 12, 2008 @ 4:58 pm
I am 39 years old, ebsteins since birth, have had one child (minor difficulties), but I have had open heart surgery. Be happy to share experiences.
It can be done successfully.
Comment by aliheat — February 10, 2009 @ 5:16 am
Hi. I am 36 years old, and have Ebstein’s anomaly. I have had two children–rough pregnancies, but no major problems– and the children are both well as far as we know. I just learned recently that Ebstein’s puts me at risk during pregnancy, and am contemplating the pros and cons of having more children.
Comment by Cecilia — February 11, 2009 @ 3:09 am
Hello all! I am a 37 year old mother of three. I was diagnosed with EA while pregnant with my first child. Six months after his birth I underwent open heart surgery for a tricuspid valve repair, oblation and asd closure. I had two more fairly uneventful pregnancies. Seven months ago I had the valve replaced. It has been a long hard recovery but I am starting to feel for the first time in my life what it feels like to have a valve that works properly.
I LOVE being a mom and feel incredibly blessed to have three wonderful children, especially considering my heart defect.
Also happy to talk to others with EA who are mother’s or hoping to be mothers!
Comment by Pat — February 17, 2009 @ 5:07 pm
Hi i’m 40 years old was only diagnosed 5years ago have 2 children, now 12 and 16 both fit and well. Had no problems during pregnacy or the birth and wouldn’t be without them, may have been different had i known about the Ebsteins before.
Comment by Angela — February 18, 2009 @ 8:41 pm
Hi, I’m a 43yo and have had 2 children. Although my cardiologist was not overly happy that I decided to have children, he kept a close watch on me. The pregancies (with lots of rest) went well. The labour is the stage they were most concerned about. I delievered both girls naturally and with few problems and I am so glad i did.
because of my heart condition adoption agencies would not allow me to adopt so having my own was my only option. It was the best thing I have ever done.
Comment by jacinta — March 14, 2009 @ 2:13 am
Hi,
I’m a 31 year old first time mother-to-be. Was born with EA and have lived a very normal healthy life. I’m 22 weeks pregnant and so far everything has gone smoothly. Although my cardilogist does have some concerns about the remainder of my pregnancy. I have 38% leakage. That puts me in the moderage category. is considered “not good.” We dont’ know if the amount of leakage is due to the pregnancy or if that amount of leakage was there before I got pregnant.
A stranger who visted my blog pointed me to this site. Thank you to whomever you are. Hopefully we can all offer each other some information and support. I know the past few weeks (since learning about the extent of my leakage) have been stressful.
Comment by Searching for Serenity — March 16, 2009 @ 2:29 pm
My apologies. Part of my comment didn’t post.
38% leakage puts me in the moderage category. Less than 30% is considered mild, whereas 50% is considered “not good.”
Comment by Searching for Serenity — March 16, 2009 @ 2:41 pm
Hi folks,
My mum has EA (diagnosed at birth) and is 62 years old. She was told not to have children, she got pregnant accidentally and was told not to continue the pregnancy. She didn’t which is why I’m here writing this. She went on to have my sister as well and is still going on. Her consultant wants her to have surgery, but shes decided shes had a good innings, lived much longer than anyone thought and survived to see her two granddaughters. My mum coped 40 years ago and I’m sure things have improved since then. Hopefully that helps some of you.
Comment by mikk — September 24, 2009 @ 8:51 pm
Thank you all for this information. My daughter in law is 15 weeks pregnant and was told today by her cardoligist she does not need to continue the pregnancy. She is getting a second opinion. Information on the percentage of leakage is something we now know to ask about. She was taken off her medication two years ago and got pregnant right before her check up. After the echo they just ran the doctor has made his recommendations. I have hope after reading your entries.
Comment by Darlene — October 1, 2009 @ 1:17 am
Update on my now 16 week pregnant daughter in law with Epsteins Anomolay. She went to Cleveland Clinic on Oct 6 and Oct 7. The Cardiologist there stated she needs to continue with her pregnacy and really gave them an education on her condition. Megan is the first patient they have see with both Epsteins Anomolay and VSD. Usually you have ASD but the VSD is less risky. Both a hole in the heart but in a different place. She will return in 6 weeks for a follow up with an Echo and also see an OBGYN there. Her delivery will be scheduled and she will deliver at Cleveland Clinic in Cleveland Ohio since there are no doctors in our area that are really qualified with her condition.
She was told that at some point in her life they will need to “repair” the valave. They will put this off as long as they can. She was advised NOT to let anyone replace the vale due to it reduces your quality of life and you are on medications for life.
Needless to say we are all very happy. We do know a lot of close monitoring is required but Cleveland Clinic really feels she will have a successful pregnancy and delivery. I urge anyone with this condition to get to Cleveland Clinic or Mayo Clinic since those are the doctors more familar with how to treat this. Her Doctors in Louisville KY jumped leaps and bounds to get Clevland Clinic to accept her insurance and convience her insurance company this was the only option for her. God does answer our prayers. I wish the best to all of you.
Darlene
Comment by Darlene — October 10, 2009 @ 4:07 pm
My friend’s unborn baby boy was diagnosed with “severe” ebstein’s. The doctors tell her there is little hope that he will to be born. She is now almost seven months. Of course she is depressed and has seemed to have given up. The baby is retaining massive amounts of fluid. His heart is extremely enlarged from trying to compensate for the malformed tricuspid valve. Does anyone think there is hope for this baby? We pray, but the mother seems to have lost all hope.
Comment by Melissa — November 25, 2009 @ 12:54 am
Hi Aliheat and all,
I am 32 years old with Ebstein’s Anomaly and i have lived with this my whole life. Cardiologists want me to consider surgery to repair the tricuspid valve, close the ASD and plicate the right side of the heart and possibly ablasion. They recommend this before I consider getting pregnant. Has anyone had this operation before? Please advise whether I should go through with it; length of period of recovery and whether surgery had a significant improvement on their quality of life? Thing is, I dont want to go under the knife if I dont have to.
Comment by Maria — November 27, 2009 @ 1:18 pm
I am 27 years old, and have a 4 month old daughter. I was diagnosed with Ebsteins at 17. When I was diagnosed I was told I may not be able to have children as the extra strain on my heart could lead to a miscarriage. At the age of 19 I changed cardiologists to Liverpool cardiothoracic center. The center are much more experienced at treating ebsteins. I discussed pregnancy with my cardiologist there and he was happy for me to have a baby. He discussed all the risks, he also said that ebsteins varies so much that it is difficult to say how my heart would cope. I had check ups with the cardiologist at different stages (echo and ECG’s). I had ultrasound scans to check babys growth every 3-4 weeks (her growth was not effected – if anything I was told by bump was on the “large side”). I was signed off work at 30 weeks, as I was breathless and tired.I went into early labour at 35 weeks, Emily was born weighing 5lb 4oz, with no difficulties. I had her at the Liverpool Womens Hospital, so i could be close to my cardiologist and also in a specialist center if myself or baby got into difficulties (I live in North Wales).I had an epidural and normal delivery. I have had no problems following the birth. My heart has been uneffectd by the pregnancy,(one of the greatest risks is that the condition could worsen due to the extra strain). In all my pregnancy notes I am noted as having severe ebsteins. I need to check this with my cardiologist. I do have a large displacement, and significant valve leakage, I have also got an ASD. I was on betablockers for a couple of years as I was having epsiodes of SVT’s, they could happen at rest or during activity, my heart rate would reach 250bpm and could last anything from 10 mins to 2 hours. The betabolockers helped, but my heart rate also started dropping to 35-40bpm.I was reffered to a surgical team and they decided to try an ablation. I had the ablation in 2006 and have felt great since. I had a few episodes of SVT in the first year after the ablation, and had a couple of episodes at 13 weeks of pregnancy. It is felt that my heart is coping well and functioning well and therefore a valve replacement should not be considered. Ebsteins is difficult as every case you read about is so different. I feel I live a very normal life, i can’t go to the gym(not that I’m bothered!) but i do enjoy walking, I play golf and last Jan I went skiing!
Comment by Louise — January 8, 2010 @ 11:52 pm
Hi, I am 38 yrs old and was diagnosed with EA at age 12. I haven’t had surgeries or any symptoms to speak of. I have had 2 beautiful babies in the last few years. I had one baby at 35 with a natural birth. I had my second baby at 37 by c-section due to breech. I had no complications at all during my pregnancies and felt great. I consulted my cardiologist recently and he gave me the thumbs up for one more baby which we want to do before I’m 40. He felt my heart functioned well and hadn’t changed with pregnancies so one more shouldn’t cause problems since I have proved able. I did have a few early beats for about a year after the last child but they showed benign on on Holter monitor. My youngest started sleeping through the nights at one year and they seem to go away when I could actually sleep. I do worry a little while pregnant as we live in a very rural area (Montana, USA) about 75 miles from the nearest doctor and 4 hours from any bigger hospital. I am trusting God on this manner as He has sustained me thus far. I try to eat only organic and natural, take supplements such as CoQ10 & Resveratrol (both heart boosters) and spend time being active (I’m a farmer). I loved reading about all the successful pregnancies with EA. Thanks for sharing!
Comment by Shannon — May 1, 2010 @ 7:26 am
Im a 25yr old, just had a baby…diagnosed with severe Ebstein’s while i was pregnant. They did’nt think her chances of survival were good, advised me to terminate but carried on with the pregnancy.
She has had open heart surgery with a bt shunt put in, now is 2month’s old waiting for her next op in a few month’s time,doc’s say still serious but she is fighting everyday!!
Comment by sophie — July 28, 2010 @ 7:28 pm
Wife had a bay before repair of her severe ea. Second kid after the the repair 10 years later caused stiffening and enlargement and additional strain on pulmonary valve. Both kids are ea free and wife is set for for second valve replacement in a few months.
Ea varies so much it’s hard to say…………….
Comment by Stephen — November 14, 2010 @ 4:46 am
I was diagnosed with EA after being born “blue”. I have lived a normal life. With the exception of falling fatigued quicker during strenuous activites (running) than others. Initially was under the impression that I shouldn’t have children. But now I have a healthy 18 month old boy who does not have EA. My pregnancy was smooth. I have been given the ok from my cardiologist to have more and then we’ll evaluate my health after to see if I’m a candidate for valve replacement.
Surgery is never something that I’ve considered, but the more research I’ve done it seems like it’s become a farily standard practice these days. This scares me a lot. But, I’m trying focus on the now and take what ever comes in the future.
Comment by SassyMandaG — December 10, 2010 @ 3:55 pm
I have a 27yr old daughter, who was diagnosed with Ebsteins at birth. She is now 29 weeks pregnant and is only now starting to get tired. It was an unplanned pregnancy, so she sppears to be burying her head in the sand regarding looking after herself. We have a lot of hospital visits coming up, but I’m frightened and wondering the best way for her to deliver. She really wants to have a section, but not giving thought to what happens after that. Can anyone advise of the best form of anaethesia/birth. She will be delivering in a very good hospital, but they have never had to deliver any mother with Ebsteins.
Comment by Debbie — March 27, 2011 @ 11:22 am