Loss of our son, and looking ahead
09/03/10
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.
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Hello Jennifer
You can look at the ‘is EA genetic?’ post and comments. However, I can tell you that my daughter Florrie (with EA and now 9) was my second baby and that I have three other children – an older son, and two younger twin girls who are perfectly healthy heart-wise.
It must have been a terrible experience but perhaps the worst part of that would be if the legacy is that you do not go on to have other children?
I had the twins scanned at 22 weeks, but to be honest it wouldn’t have made any difference to the outcome even if they had EA. I wouldn’t swap Florrie for the world, but thankfully I was not aware of her condition when I was pregnant.
Hope that helps
Good luck and keep in touch
Caroline
Comment by caroline — March 10, 2010 @ 9:51 am
Hi Jennifer,
Im so sorry to hear of Harrisons death. Our second child was taken by EA in Dec 2004, I have just posted our story (Tia Elise..A life lost due to ignorance).
I have an older child with an innocent heart murmur & have had 2 more children since losing Tia, both have healthy hearts. I am more than willing to share with you our care & experiences both regards genetic counselling & during subsequent pregnancies. We were seen at Liverpool Womens Hospital.
I hope the days ahead are gentle on you.
Tasha x
Comment by Chasing Rainbows — March 11, 2010 @ 1:06 am
Caroline and Tasha, Thankyou both for your comments. It is reassuring to hear that you both have had healthy children before and after your children with EA.
Tasha, I would be very interested to hear about the support you recieved (i’ll give you my email or phone number if you’d prefer not to post this info on the website) As yet we believe there was no genetic reason for Harrisons EA (my amnio was normal) but we are awaiting results from a piece of the cord (apparently it was very short).
We’re any of you or your children tested for heart problems following the EA diagnosis?
Thanks again for your comments and kindness
Jennifer
Comment by Jennifer — March 11, 2010 @ 3:48 pm
Hi Jennifer,
Our results from genetic testing were inconclusive & we were told, “we would like to say lightning cant strike twice, but we cant be sure”. I wont lie to you, my subsequent pregnancies were stressful. I had a very caring consultant & this helped. I am happy to be in touch via email (am wondering if Caroline can pass my address onto you rather than us posting them here?)
My older child was checked for Ebsteins following his sisters death & both younger children received further checks after delivery. Neither myself or my husband were tested (which I did query) but I have since had very through checks done due to other health worries..Im happy to discuss all this via email as I know from experience any bit of info you can get is important.
Tasha x
Comment by Chasing Rainbows — March 15, 2010 @ 10:17 am
Hi Jennifer,
My mother had 5 kids and I’m the only one born with EA and it didn’t really effect me until I was 37. I just had surgery at 46 to repair the valve. I was lucky I had a normal childhood. I have 2 boy 26 and 23 neither one have EA. I hope this information will help you and give you some peace about EA.
Frances
Comment by Frances Gingles — April 1, 2010 @ 7:25 am
Hi Jennifer,
My daughter Emma was born with EA over 23 years ago and has had valve replacement surgery twice,once when she was 9 and again when she was 22 and she is doing really well. She was my first born and I have gone on to have 4 more children,all with healthy hearts. I had echos done on all four pregnancies and they were all clear. I hope this will help you and wish that when my daughter was born there was this support available.
Margaret.
Comment by Margaret Hooper — April 6, 2010 @ 9:40 pm
Hi,
I just want to thank everyone for their very useful comments regarding having more children. To hear all these positive stories really does give me reassurance about having another child.
I saw my consultant recently to get the test results from Harrisons cord…..everything was normal and there was no genetic reason for Harrisons EA. He also said there is no medical reason why I cannot try for another baby.
Thanks again for your support and comments.
Jennnifer
Comment by Jennifer — April 21, 2010 @ 1:36 pm
Hi,
I want to say that Im so sorry, that you lost your son, and wish you all the strength in the future. I lost my son Andrew to EA, in 2007, they picked up a fast heart rate at my 36 wk scan, he was born that same day by emergancy section, and sent straight to pendlebury childrens hospital, where we got the diagnosis. It was a total shock, and utter torment,sadly we lost our boy after 13 days. Andrew was my second child, my first was completly healthy. I decided to bite the bullet and try for another baby after three months, my heart was in my mouth all through the third pregnancy, even though Id had all the tests going. My third child Max was born a week before Andrews 1st birthday, and thank God he was healthy, with no problems. My thoughts are with you and your family, and I wish you all the luck xx
Comment by kathleen — May 14, 2010 @ 11:12 pm
Dear Jennifer,
I lost my 15 days old daughter Harriet to EA on 26 April 2010. My first daughter Olivia, who is nearly 3 years old, is perfectly healthy. I noticed Harriet’s problems with breathing very early on. When mentioned to my midwife and health visitor, was told there was nothing to worry about unless her lips went blue… When they did, it was too late. Three weeks before I was due, I started experiencing very bad what I thought chest pains, which turned out to be gallstones (as everything is pushed up when pregnant, it felt like the pain was in my chest). I was taken to Preston Royal few times, but apart from pain relieve, they, understandably, were not able to do anything until I delivered. I had a wonderful experience with labour and birth, one I will treasure for the rest of my life. However, two weeks later I was scheduled for an operation to remove my gallbladder. My husband was looking after both of our girls when I went back to the hospital. In recovery, after a high dose of pain relieve, I was told that my daughter is in A&E and she is struggling for her life. Still not fully recovered from general anaesthetic, I was taken to A&E, where the medical team, of what seemed at least 2 dozen, were trying to resuscitate Harriet. My husband was a broken man, as he blamed himself for not taking greater care of Harriet while I was in the hospital. We were told that Harriet had a very serious heart condition and although she could be taken to Liverpool Childrens Hospital for specialised assessment, they feared she would not make it. At that point doctors were not sure to the exact nature of the condition, apart from that Harriet was dieing from it. We had to make a decision and we decided to let Harriet die peacefully in our hands. It was only after the postmortem that we found out that she died from EA.
As I am not originally from this country (UK), I don’t like to complain. However, in this case I do feel that Harriet was let down by postnatal care she received. I would like to stress that I was very happy with the health care I received while pregnant and during my numerous stays at Preston Royal, and very grateful to the medical team who tried for 4 hours to resuscitate Harriet.
We are planning to have more children and will start trying next month, 3 months after previous birth, as recommended by my GP. It is very reassuring to read that so many women go on to have perfectly healthy children after their encounter with AE. I am even more determined to have a large family now. Best wishes to you and your family xx
Comment by pcowburn — June 14, 2010 @ 3:52 pm
Hi to you (not sure of your name). Many many thanks for sharing with us your very moving experiences with Harriet. Wishing you and your family courage as you go along with your plans for expanding your family.
This should remind us all that on this site we are working towards a better future and prognosis for those with EA.
Caroline
Comment by caroline — June 14, 2010 @ 6:35 pm
For pcowburn,
I’m so sorry to hear about Harriet, you had such an difficult decision to make. You must treasure the time you had with her.
I hope your husband finds peace with himself as he did what any other father would have done and took the best possible care of your daughter. It is so difficult not to blame yourself, I often think that I could have done something that could have prevented Harrisons EA but in reality I know this is unrealistic (There was no genetic reason). We have nobody to blame and that too is testing at times, as the doctors says it was just bad luck and as far as i’m concerned our luck couldn’t have been worse.
I wish you all the luck with any future pregnancies and hope to hear of happier times for you and your family, as you say the stories of women going on to have healthy children is a much needed reassurance. We are trying again too and hope we will have a more positive outcome.
Take care
Jennifer
Comment by Jennifer — June 29, 2010 @ 9:42 pm
Hi Jennifer,
My daughter Harriet was born in 2007 and was transfered to Alder Hey they day she was born with extreem EA we were told there was nothing they could do for her as she was too sick, however she kept fighting and was offered an operation that could help in the short term as she would require 3 other operations later on, she was like any other baby in all other ways even on her weight/growth chart, she later developed an enlarged left ventricle and cardiomyopathy so was unable to have any other operations she was offered a heart transplant but unfortuantly died 5 days afeter going on the list, all this time I was pregnant with my son who as soon as I fell pregnant I was offered care at Liverpool Womens with a full cardiac scan by pediatric cardiologists pre and post birth he is completely fine and as it turned out a complete distraction as he arrived just 6 days after my beautiful Harriet passed away, my family has had genetic tests at the Countess of Chester and we were told that we had 2% risk of another child with ea and that our childrens children did also but considering they said any couples risk of a child with ea is 1% its not that great
thanks
becki
Comment by Rebecca Cartwright — July 27, 2010 @ 9:08 pm
Hi.
I just wanted to let you know that I am now 12 weeks pregnant. I had a scan done last week by my consultant and am going to have weekly scans until about 20 weeks and a fetal echo at Liverpool Womens about 24 weeks. The extra monitoring is a great reassurance. I am both excited about the prospect of a new baby but it is also a constant reminder of our loss. We are just hoping for a happy ending this time.
Jennifer
Comment by Jennifer — September 6, 2010 @ 11:09 am
Good luck Jennifer. let us know how you go along
Caroline
Comment by caroline — September 6, 2010 @ 6:10 pm
I am a 34 year old woman with Ebstein’s anomaly. My 31 year old brother (same mother and father) does not have the disease nor does anyone in my family have it. I have had three children and are all EA free. Please understand that though some genetic cases have been determined all case are not hereditary.
Comment by Melissa Holden — August 20, 2011 @ 2:34 am
hi jennifer i to lost my son anthony april 9 of 94 we didnt even know he had an issue until he was born and they found it. he was transported to hershey medical center where he lived for 13 days and then they said they would need to do emergency surgery to try to save his life but it did not work and he passed right after surgery..it was the hardest thing i have ever been through in my life, and even now i have 3 other children all younger and healthy thank god. but it never goes away. they say it get easier. i think about him everyday and still have trouble coping sometimes but i keep thinking to myself i have an angel in heaven. if u ever need someone to message or just to talk i would be glad to talk.email me anytime…markleyterri@yahoo.com. and maybe we can exchange numbers sometime. it would be good for me as well since i never met anyone else who had a child with the this heart defect. thankx for reading.. terri
Comment by terri markley — October 17, 2011 @ 4:46 am
Its been a while since I was last on here but am pleased to say that since my last post I have had a healthy baby girl (Erin) who is now 7 months old.
There isn’t a day that goes by without me thinking of my beautiful boy but I have been blessed with two gorgeous healthy girls and am so thankful to have them in my life.
Comment by Jennifer — October 31, 2011 @ 8:41 pm