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.

Posted by caroline.

37 Comments »

  1. Our daughter was diagnosed at birth, but we had two anomaly scans at 21/22 weeks which were inconclusive regarding her heart and in retrospect, maybe the fact she has ebsteins was why they couldn’t get a good view. Personally I’m not sure I would have wanted to know at that stage – I’d have just spent the next 4 months very anxious. What do other people think? It was a shock when I’d just given birth to be told that our baby was ill, and maybe we’d have made some different decisions the birth (probably wouldn’t have hired that home birth pool!) but on balance I’m glad I didn’t know.

    Comment by katyt — March 16, 2009 @ 11:42 am

  2. Hi, my name is patti. i have a 13yr old daughter that was born with ebstiens. i keep reading that people found out before their child was born and it upsets me that my doctor always said my daughter was heathly and saw no problems. i wish i would’ve know before hand so i could be prepared for it. what can i do about this?

    Comment by jpgraham6 — May 5, 2009 @ 3:02 am

  3. Hi Patti

    Are you saying that her GP still says this? Is she under a cardiologist, usually those with Ebstein’s are monitored on a regular basis e.g.annually.Or, I am not sure if you are upset that she wasn’t diagnosed before birth, in which case I guess there is a little that can be done about that. Personally, I was very glad that I didn’t know about Florrie before birth as it would have marred the prgnancy and first few years of her life for me because of anxiety.

    In fact, sometimes I still wish I didn’t know, as so far she shows little symptoms and she was 8 two days ago, though I guess if/when she does show symptoms then that would be a great shock. I am sure that everyone feels differently about this matter.

    Caroline

    Comment by caroline — May 5, 2009 @ 11:52 am

  4. Hi Caroline,

    I am amused by your story….I am 30 weeks pregnant and just found out that my baby has ebstein. They also found that her right side of her heart is enlarged. I am devasted, but reading your little story has inspired and given me hope to believe that things will be ok.

    Just curious, has your baby gone through any surgery yet?

    Comment by Kristy — May 15, 2009 @ 4:21 pm

  5. Hi Kristy

    You must be feeling very strange about all this. No, Florrie has had no surgery at all yet, and she was 8 last week. She shows no symptoms except that when she has her echo the heart is enlarged. She does very well they say considering the deformity of her valve, and is like any other child her age. She has Ebstein’s in a moderate form, the severity is important as you will have seen from other parts of the site.

    Please keep in touch with us, perhaps others who were once in your position might be able to pass on some information.

    Caroline

    Comment by caroline — May 15, 2009 @ 10:34 pm

  6. You ask a great question…. would a parent rather know or not about their childs Ebstein’s? In our case, if we didn’t know our now 5 year old son would not be alive. Our son was diagnosed at 19 weeks of pregnancy with severe Ebstein’s Anomaly, pulmonary stenosis of the pulmonary valve and had a very very large right atrium. His cardio-thoracic index (what % of his fetus chest cavity was taken up by his enlarged heart… eventually sqeezing out his lungs etc) was off the charts. He had a 95% chance of dying in utero, and yes this naturally made for tremendous anxiety. However if we didn’t know the MD’s would not have been following my pregnancy so closely, they would not have been testing for fetal hydrops and they never would have known to take our son 6 weeks early, by a planned c-section (c-section so there was less cardiac stress on the baby). Knowing saved our sons life.

    Knowing also allowed the MD’s in Boston, Massachusetts, USA to perform lots of tests so that when our son was born the cardiac intensive care unit was waiting for him and knew his condition. He was born at a hosptial different than where our daughter was born, he had to be in a large city hosptial attached to children’s hospital. None of these things would have taken place if we didn’t know.

    So sure the stress was horrible, HORRIBLE from 19 weeks of pregnancy to 34 weeks when he delivered, but knowing saved his life, so in the end, of course, it was worth it.

    Will C., 5 years old, cone surgery at age 3 1/2, doing well

    Comment by Paula Colahan — June 20, 2009 @ 4:36 pm

  7. It is interesting & encouraging reading your stories. My baby was diagnosed at 22 weeks with Ebsteins Anomaly. Today I am 28 weeks and saw the cardiologist again today & had another fetal echo showing the baby has severe EA, with pulmonary stenosis, pulmonary valve not functioning, possible pulmonary artresia, and patent foramen ovale. The heart is enlarged with cardio thoracic ratio of around 60-70%, but the cardiologist thinks this is possibly a conservative estimate. He has told us that the baby may possibly die in utero before our next fetal echo at 32 weeks. The stress has just been devastating and I dont know if am grieving for something that may or may not happen. I would be very interested to hear how others have coped with the stress during pregnancy. I would also be interested to hear if there is anyone in Australia, as that is where I am and there seems to be very few EA cases over here.

    Comment by Cindy — August 20, 2009 @ 1:11 pm

  8. I guess I’ll join this short list, I am almost 30 weeks pregnant and my baby was given an Ebstein’s diagnosis around 20 weeks, I’ve had three fetal echos so far and another coming up in a week. It’s been very hard to try and find other’s stories, it seems there are a lot of “heart blogs” out there, but I’ve only found one with Ebstein’s so far. It’s so tough not knowing what to expect…Cindy, big hugs to you mama!

    Comment by Clare — August 21, 2009 @ 4:09 am

  9. Hello all My name is Jessie and my son Tyler was diagnosed with ebstein, before he was born, I was due june 14th 2009 and my last ultrasound they had seen he has an enlarged heart. they took him three days later. He was rushed off to A.I Dupont childrens hospital There they have a procuder called Norwood procdure. Its 3 major surgeries he has to go through. One when he was first born, they put a shunt in for his blood to circulate the right way, Next he will have one at 6 months then one years old. I am so happy to have found other people out there with the same thing. I would love to talk to all of you because I know exactly what your going through, Tyler was hospitalzed for 2 and half months and now is HOME :) hes on alot of medications and a feeding tube but LOOKS ABSOUTELY great! I know its hard to understand all of this, I was told he was not going to make it if he didnt have surgery. then I was told after the main surgery the first 24 hours are the toughest, his body has to accept a forgien object in it. I want you all to know I am here for you all, My email address is jessie_devault -at- yahoo.com I would glad to give out my street address for you to write or ever my phone number, I have met such amazing people out there, and I want to give back!! Hang in there!!

    Comment by Jessie Hughes — August 22, 2009 @ 3:27 am

  10. Clare, you and I must be pretty much on the same page being due both with Ebsteins babies around very much the same time. If you would like to contact me, my email is c_m_sartain -at- hotmail.com I would love to chat to you further if you are up to chatting about how things are going. I wish you all the best, these EA babies are true fighters.

    Jessie, its stories like yours that always put a smile on my face and give me back some of that hope that is taken away everytime I speak with the Drs. I am so glad that your little boy is doing so well. I will send you an email, I would love to chat about your experience with EA if you can.

    Friday, the reports came through for my babys ultrasound and the cardiothoracic ratio is at 80%, so not feeling too confident at this stage.

    Comment by Cindy — August 23, 2009 @ 12:03 pm

  11. Hey Cindy, I wrote you back but I did want to add his was at 80-85% too. Dont give up!! Your baby is holding onto your strength, and espically when he/she is born, they will need you now more then ever!! Your baby is already putting up a fight and will continue to fight, and all we can do is just be there!! Hang on and be strong!! :)

    Comment by Jessie Hughes — August 24, 2009 @ 4:28 pm

  12. It is so wonderful to have found this site. These stories bring me some hope. I am 22 weeks and found out yesterday that our son has ebsteins with pulmonary stenosis. I feel so crushed at the moment and overwhelmed. If anyone has any advice it would be greatly appreciated.

    Comment by Sarah — October 29, 2009 @ 2:49 am

  13. Sarah, I would be more than happy to talk to you, I was in your position just a few weeks ago, and now my baby is here and I’m dealing with all the heavy duty hospital stuff, but I know what it’s like to be pregnant with the diagnosis. please email me lookupseeblue at hotmail dot com

    Comment by Clare — November 2, 2009 @ 6:29 am

  14. Hi
    I am a 31 year old from Denmark, and I would just like to share my thoughts with you, since I am pregnant in week 20 and are expecting a girl with Ebsteins Anomali. I am very sad and I just don’t want to loose her. What cab I expect in the future for her? Any other good advises
    Thank you so much
    Michelle

    Comment by michelle — November 10, 2009 @ 8:16 pm

  15. Hi Michelle

    I hope you may have got some good information already from people on this site. What you can expect from the future really depends on what kind of severity the condition takes as Ebsteins is quite a wide reaching term and can range from mild to very sever. Have you had any indication of such a diagnosis. There are plenty of stories on here about pregnancies and post-pregnancy experience.

    What is the expertise and care in Denmark regarding Ebsteins?

    Keep in touch,

    Caroline

    Comment by caroline — December 3, 2009 @ 5:46 pm

  16. Hi

    I’m 33 weeks pregnant and my son has been diagnosed with moderate ebsteins, moderate regurgitation and has developed arythmia which so far has not been persistant. I was just wondering how many of the moms on here had a natural birth and how many had a c-section? The reason I ask is that the leaflet we were given about inducing labour, which they are planning to do at 38 weeks, states that the drugs that they use have been known to cause tachycardia. We just want what’s best for our son but could do with some advice.

    Comment by Kerri — February 25, 2010 @ 10:00 pm

  17. Hi repling to kerri, my son Freddie is 20 months now, and we found out he had ebsteins at our 20 week scan, we planned to have a normal delivery, recommended to us by our doctors. I personally thought a c section would be better as i felt it would cause less stress than a normal birth, but apparently this was not the case. As it happened waters broke and nothing else happened so two and a half days later Freddie was born by a c section. Unsure of what to expect when Freddie arrived was pleasantly surprised was monitered in nicu for nearly a week, heart checked by Bristol, we knew he also had Vsd, but coped and fed really well, came home and has been seen regularly by cardiologist, on medication doing well, so what seemed the worst time in our lives, has just become part of who Freddie is, which we just carry on with.
    Best wishes
    Laura

    Comment by Laura Rumming — March 9, 2010 @ 6:16 pm

  18. I try to write on here all the time, If you scroll up Im the story with Tyler, he had serve ebstien anomaly of the tricuspid vavle. He is home :) He just recieve his second stage surgery and next week he can be back on his belly :) I know how you feel trust me. Im here for anyone email me at jessie_devaultatyahoo.com…..Best of luck to all!!

    Comment by Hi michelle — March 25, 2010 @ 12:21 am

  19. HI,

    our daughter was diganosed at 20 wks with sever EA, I am currently 34 wks preg and just had a fetal echo at Childrens hospital of philadelpia and was given the devestating news that she has a 50/50 chance of survival. I am not sure what to do, please any advice would be great

    Comment by anne — April 3, 2010 @ 2:13 pm

  20. Anne, I don’t know why the doctors always seem to tell you the worst possible outcome, I was told over and over that my baby would not survive to birth, would not live and yet she’s here, beating the odds. It is so hard to stay positive, I know. please feel free to write to me if you want to talk or ask any questions, and if you visit my blog you will see a short list (but growing) of other blogs that have stories of Ebstein’s babies. The best thing you can do is educate yourself and prepare yourself for what to expect by reading other people’s stories.

    Comment by Clare — April 8, 2010 @ 5:26 am

  21. Hi everyone,

    Reading your posts has made me feel like there is some hope.
    Our little girl was diagnosed with EA at 22 weeks.
    I am now in my 38th week and things have gotten much worse. Her heart is so huge it fills her whole chest and compresses the lungs. The drs arent sure if the lungs will work at all and if they don’t they wont operate.
    This weekend they are booking me into hospital for a week before the c-section to monitor the condition.
    They dont give her much of a chance and told us to prepare ourselves for the worst.
    After reading this forum I see that even babies with severe EA and compressed lungs have some kind of a chance, so maybe in our case it will be the same…

    Comment by Eva — April 21, 2010 @ 9:52 am

  22. Hi Everyone,

    I recently delivered my baby on 4/18/2010 and he was diagnosed having ebstein’s anomaly when he was born. I had an ultrasound done at 20 weeks but everything was normal. His heart condition was an overwhelming surprise. I didn’t know what ebstein was I didn’t understand what the doctors were saying. We are still at Children’s hospital of central California, where cardiologists are still working on his lungs. His lungs were so compressed that he was having difficult breathing. He is currently on nitric oxide and prostacyclin to help open up his lung vessels. It’s been chaotic but we are still hanging on with hopes that he’ll get better soon. He’s been showing small progress each day. Thank you for all those who shared their stories because it gives me strength and the courage to keep fighting for my son’s life.

    Comment by Panhia — May 4, 2010 @ 2:25 am

  23. Hi, My name is Jessica, I live in Phoenix, AZ. I am 26 weeks pregnant and our baby boy has just been diagnosed with EA. They first noticed that his tricuspid valve looked a little abnormal at my 18 week ultrasound, and shortly thereafter an expert looked at it and was unable to diagnose it as it was so mild and the blood flow was still going in one direction. Now the valve has become less efficient and is allowing blood to leak. So far they have not found any of the other defects associated with EA, but they are monitoring it.
    We have consultations set up with two different pediatric cardiology teams so that we can decide which hospital to deliver at (now that we know we might need a NICU). If anyone has experience with Phoenix Children’s or St. Joseph’s in regards to EA, I would love feedback as we make decisions.
    Although this is the scariest thing I’ve ever experienced, I am grateful for the resources available to us and for information from this site and others. I admire the courage of you moms. Thank you for lifting my spirits, encouraging and supporting!

    Comment by Jessica — June 10, 2010 @ 1:42 am

  24. All I can say is hang in there and spend as much time as you can with your babies, so they know you are there and that you love them.

    It’s good that you have a precise diagnosis and the Dr’s now know what steps they should take.

    NO case is hopeless!

    I wish you lost of strength and courage.

    Comment by eva — July 13, 2010 @ 3:25 pm

  25. I feel compelled to share my daughter’s story finally. My daughter was diagnosed with Ebstein’s at my 21 week ultrasound. To say the news was devastating doesn’t even describe it. We were told to go ahead and research the condition on the internet. Many of the articles found on the internet gave little hope to change our devastation. Then, I stumbled upon this site and this board. I was reading stories of children who were living with this condition. It gave me that hope that I needed.
    I was followed very closely prenatally. At 38 weeks, they saw fluid by her lung and induced me that day. To my surprise they allowed her to be born vaginally. Throughout my pregnancy they diagnosed her condition as moderate. They saw moderate regurgitation of the tricuspid valve and moderate regurgitation of the pulmonary valve. They were very careful to tell us that they could not plan their course of action until arrival. It could be mild enough that it is managable with medication or it could need surgery.
    She was in much worse shape upon arrival than they expected. Her heart was taking up almost her entire chest. It was already planned that she would be transported to Nationwide Children’s Hospital in Columbus upon arrival. So, nothing changed. They wanted her to grow before her first surgery. They tried to wait until she was 4-6 months old. However, at 6 days old she went into her first surgery. She had a very rough recovery. BUT, I am happy to report that she is now 5 months old and doing wonderful. We are working on getting her to grow grow grow before her next surgery in a few months. Her tricuspid valve was in such rough shape that it was beyond repair. So, they are actually treating her case as if she had Hypoplastic Left Heart Syndrome.
    I have read in some of the posts about the statistics you were given… I am so glad that we were never told her chances. Everyday spent by her bedside I just tried to remain positive and I talked to her a lot. They just kept telling me that it was a slow road. Believe me, slow is worth every ounce of time. I just never let myself believe she wasn’t going to make it. I think if they had told me her chances, they would not have been pretty. She was a very sick baby. As Eva said, “NO case is hopeless!” We were told that if you look up resilient in the dictionary you would find a picture of our little girl.
    Let me say that while it was devastating to find out about her condition prenatally… It is the reason we have her here today. They knew exactly how to care for her. We were blessed to live in a city with one of the best children’s heart hospitals in the country. I think being in a place with such experienced people also helped. Please take from our story the hope that I found in reading this board that terrible October day.

    Comment by Stephanie — July 27, 2010 @ 5:15 am

  26. I was very touched by this, as we set this site up to provide such help.
    Please let us know how your daughter goes along and thanks so much for posting.

    Caroline

    Comment by caroline — July 27, 2010 @ 10:13 pm

  27. I dont understand how most found out while still pregnant. My son wasnt diagnosed until he was born. He had a murmur and lower oxygen levels. After a cardiologist was called in they diagnosed him with Ebsteins. My question is how did they find this in your unborn child? I was told it wasnt found on my ultra sound bc I was doing the breathing for him. That being said unless they were really looking at his valves they wouldn’t notice it. Now my question is how was mine over looked but yours found? In hindsight I’m glad I didnt know bc I would’ve freaked out the entire time. My son is now 14m old and doing good. He has regurgitation that we have to monitor but he is in the top of charts for height/weight. He is like any other toddler his age. I see no physical signs thank the lord of this anomaly. Please if anyone can tell me why they were looking so closely at your fetus heart and how it was discovered. Makes me second guess my OBGYN

    Comment by Amanda — February 2, 2011 @ 2:58 am

  28. I am unsure as to why some are and some aren’t spotted during ultrasound. Florrie wasn’t picked up at birth or the check before you leave hospital, or a visit to the GPs because she wasn’t putting on weight. She was eventually picked up during a visit to the asthma clinic at 2.5 years old. But for that, we still wouldn’t know and she will be 10 years old in May.

    Like you I am glad I didn’t know when I was pregnant, but for many people their baby needs far more help when born so it is important.

    Comment by caroline — February 3, 2011 @ 12:03 pm

  29. My daughters case was very severe. Her tricuspid valve was so deformed it was beyond repair. I am really not sure how the tech found it at my OBGYN. We didn’t know enough to notice she was spending extra time on the heart… But apparently, she was. She saw something she didn’t like. The doctor came in and told us that she is excellent at what she does and she trusts her 100%. We were then sent to the high risk docto for a level two. In this ultrasound they could see in detail. They told us they thought it was ebsteins and sent us to Children’s. The cardiologist confirmed that it was Ebsteins. He told us he believed it to be a moderate case. She was much more severe than they realized. She had surgery at 6 days old, spent 3 months in the hospital, and had her second surgery at 8 months. She did beautifully with that and got out in 5 days. She is now underweight and more on par developmentally and weight with a 9 month old. We are assured she will catch up. We have one more surgery down the road around 2 and a half years old. She will be a year on February 13th. I believe that the detection in utero really depends on the severity of the case. We were blessed to know. Had we not known, they wouldn’t have known to induce me at 38 weeks. She had fluid by her lung and needed to join the world. She had to be intubated immediately when she was born. I think this just speaks to the severity of her case. They are all so different! Some people will not show signs of Ebsteins until adulthood.

    Comment by Stephanie — February 3, 2011 @ 12:32 pm

  30. I am currently 31 weeks pregnant with a baby boy who was diagnosed with Ebsteins at my 20 week ultrasound. Like Stephanie, they noticed his heart was very large and sent me to a high risk doctor. That Dr. diagnosed the anomoly and referred me to the cardiology clinic at Children’s Hospital here in Denver. There, they were able to diagnose the severity (which means everything) of his anomoly, which was moderate. A normal heart should take up 1/3 of their chest cavity, and our baby’s heart was taking up about 50%. The outlook was decent but had a lot of chance for a bleak turn. It’s been a very long 11 weeks till now, but we’re finally entering the somewhat safe zone where he’s big enough and his lungs are mature enough to where they could pull him out if necessary. So we have a lot of hope and are staying very positive. Now his heart is about 60-70% of his chest cavity, and the right side of his heart isn’t pumping any blood out through the pulmonary artery. But the left side is working great and the right valve (the defected one) is still squeezing well. So we’re hoping he can stay in there full term so he’s big and ready for surgery upon birth. Our goal is to give him a shunt surgery and then go for the cone surgery once he’s older so he’s left with a “fixed” 4 chamber heart. The backup plan is to give him the 3 step surgery (Norwood 1 then Norwood 2 and then the Fontan operation) which would leave him with only the left side of his heart functioning. We’re told that kids with these surgeries do really well and can still play sports and act normally, but they won’t be olympic athletes. Oh well, I can live with that. ;) So we’re celebrating the small milestones for now, like making it to 32 weeks safely. I’ve been told that structural defects are better than mental since structural can be fixed. I guess there is some truth to that. It’s just making it to surgery that has been so scary thus far. I will try to keep you all posted on how our baby is doing as time progresses. Now I have 3 apts a week (2 NSTs a week and one echo), so he’s being very well monitored. Now we just wait and try to be prepared for the quick decision to pull him at any time. Ultimately, having hope and staying positive have been the things that keep me going. My husband and family have been wonderful and supportive which has also been a great help. We’ll get through this and I just keep thinking of how nice it will be about 6 months from now when this is all over (for the most part). :)

    Comment by Cara — February 11, 2011 @ 4:47 am

  31. Hello Cara

    Thank you so much for posting, hopefully you will have been encouraged by the other postings under ‘unborn baby’. Do let us know how things go when your baby boy is born.

    Caroline

    Comment by caroline — February 11, 2011 @ 11:12 am

  32. Hello again. I wanted to give everyone a quick update on our status since I delivered Davis at 35 weeks due to the amount of fluid that had built up quickly in his abdomen and around his heart. They were concerned he had Hydrops and ordered an immediate c-section that day. Needless to say I was in a bit of shock at hearing this, but in the end all went well and we now have a beautiful little boy. His heart rate raised to 220 in utero once I got to the hospital and didn’t want to go back down, so within an hour, they had him out and I was in recovery. He was taken immediately to Children’s Hospital here in Denver where the cardiac ICU was waiting for his arrival. They did a fantastic job of taking care of him and we’re already looking at going home on Monday after 17 days in the hospital. He ended up not needing any surgery at this time and we’re taking him home to get big and strong so that one day he can go in for the surgery that will repair his right valve. At this point we’re thinking this will be the cone surgery, but have not had these discussions with the cardiologist yet since this will be far down the road. We’ve been keeping a blog with daily updates on his status so feel free to check out Davis’s Journey at davisgrimsley.blogspot.com We feel very blessed to have had such a positive outcome to such a scary diagnosis. If there is one thing I’ve learned through all this, it’s to never lose hope.

    Cara

    Comment by Cara — March 26, 2011 @ 2:21 am

  33. Cara that is a wonderful message for others to read in the future thank you so much for posting. please keep in touch. Caroline

    Comment by caroline — March 26, 2011 @ 8:54 am

  34. I originally was looking to see if I would have to have a c-section with our son when I discovered this site.

    I just found out a week and half ago that our son has Ebstein’s Anomaly. We are Spirit-filled believers and know the healing power of God, so we are standing on our sons healing before he is born!

    Though do believe that no matter what the Lord will use this to glorify Himself. Could be our son will bring healing to families. Or like you all are doing understanding for the next person in the situation.

    I’ve learned through out my walk that the Lord will not always take away the problem but that He will always give us the grace and strength to handle it. Even if it may seem like we have reached our end He is still there to help us cry through our pain.

    Tears bring healing! I am now trying to find different avenues to avoid stress.

    We really wanted to have our son naturally. Though by looking at all your posts it seems like that will not be an option unless the Lord heals him. Is it normal for them to take the baby early? I would like to get all the knowledge I can on this.

    Comment by Mindy — April 14, 2011 @ 9:00 pm

  35. Hi,
    my daughter was diagnosed at 18 weeks. They gave her a 5% chance of making it to birth. They were right. At 18 weeks it was mild to moderate. then at 26 weeks her heart had enlarged sooo big, it took over her whole chest. She was still alive but barely. They decided the best idea would be to induce me and let me have her naturally. They said to me “it doesnt matter about monitoring you because shes going to die anyways” It has been almost 5 months since shes been gone. The docs havent really given me any answers to my questions etc.
    Good luck everyone expecting a EA baby, my prayers are with you…

    Comment by KellyConnors — June 16, 2011 @ 2:47 am

  36. Dear Kelly

    I am very very sorry to hear of your loss, and thank you for your posting.
    I am not sure what questions you have but you could raise them on this board (see posting on ‘is EA genetic?’), and/or make sure your doctors know that you need some more information at this bewildering time.

    Caroline

    Comment by caroline — June 16, 2011 @ 1:50 pm

  37. Our son was diagnosed with severe ebsteins with hydrops around his stomach and heart at 18 weeks this past August. In a scale of 1 to 10 we were told his severity was a 10, that’s how bad it was.
    The prognosis was so poor we decided to terminate the pregnancy at 21 weeks, after checking with Boston children’s surgeons, local perinatologist and cardiologist in the Orlando area, and innumerable nights of praying to God for a miracle.
    He looked like he was sleeping, only a faint heart beat, he did not suffer, did not try to breath, he died in my arms in peace.
    Our only other option was to wait for him to die later in the pregnancy or die at birth, so we let him rest a bit earlier.
    There was no hope of surgery b/c the defect was so severe, heart was very enlarged and lungs were so squeezed and not growing correctly. And the hydrops were very severe too.

    For us is not about loosing hope, is about sparing our very ill child from further agony and stress of being born full term only to die a few hours later.
    Please pray for us in this hour of despair.

    Comment by Maria Angelica — November 7, 2011 @ 8:39 pm

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