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Severe Fetal Abnormalities

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Just found this forum and needed help/advice on dealing with some terrible news.

My husband and I have been trying for a baby for two years. Found out in early January that I was pregnant and was over the moon with excitement. In the first three months of pregnancy I was rushed to hospital five times with threatened miscarriages.

I had numerous scans and all showed that baby had a heartbeat. They couldn't determine where the bleeding was coming from and assumed it was from the neck of the womb.

I had my 12 week scan and everything looked fine. I refused all screening for Downs and other disorders as we both felt we could cross any bridges when it came to it. All other general screening came back fine. I am rhesus negative and needed anti-D injections after 12 weeks when I was admitted with bleeding.

We went for our 20 week scan two days ago and found out we were having a little boy, Samuel James. We also found out he has severe and widespread fetal abnormalities. He has fluid build up in his head, chest, abdomen and under his entire skin. His heart is 1/5th the normal size with irregular heartbeat. His liver is tiny and his brain has hypoplasis. He has one kidney and his has no stomach or lungs. The doctor told me the abnormalities are incompatible with life.

We are having a multitude of tests to determine why Sam has developed in this way, even though they suspect it is Aneuploidy, and have been referred to see a Fetal Medicine specialist. We have been given two choices...

1) Allow Sam to die naturally either in the womb of heart-failure or at birth as he won't be able to breathe when outside the womb.

2) Terminate the pregnancy.

I want to make the best decision on what is right for Sam. I don't want him to suffer anymore than he has already. I also need to think about my own welfare because if Sam dies inside me then it increases the risk of infection and complications in further pregnancies. The thought of giving Sam the opportunity to fight for life only to be rewarded by a horrific death at birth that is painful and full of suffering makes me feel sick and gets me so distressed.

Is there anyone out there that has experienced the same as us and had to make the hard decisions we have to make? Can anyone refer us to any support groups or places that have more information in order for us to make an informed decision? We appreciate any help that people can offer us.
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replied April 21st, 2010
Community Volunteer
Wow, this is odd, I tried finding support groups by searching on Google and couldn't find any that would be unbiased and give different perspectives. I did manage to find a few that may help you:
http://www.genetic.org/knowledge/support/a ction/C112/(this site may better help you find a support group near you)
http://www.arc-uk.org/ (yes, based in the UK, but it is very informative and unbiased)
http://www.arc-uk.org/(also based in the UK)
http://www.teddyloveclub.org.au/index02.ph p?id=51(support and understanding for bereaved parents, also not US-Based)
*since I have no clue where you reside, I cannot offer support groups that may be local to you, but also I have not found many support groups

You could also try March of Dimes, although I am unsure if they have support groups.

Only you can decide, with what information regarding your son's condition, whether or not to proceed with termination. Many women have terminated due to fetal abnormalities, many women have chosen to stay pregnant and let nature take course. But it is your decision on what to do.

Below are links to sites that provide more information on your son's disorder, although since you did not specify what type of aneuploidy he may have, I could do no research on sites for support groups or information regarding specific aneuploidies:
http://en.wikipedia.org/wiki/Aneuploidy
http://www.reproductivegenetics.com/aneupl oidy.html

Before I can help further and before you make your decision, please keep that appointment with your Fetal Medicine specialist.
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replied April 21st, 2010
Community Volunteer
After much thought and consideration, until there is an actual appropriate forum for those faced with this difficult decision, I have decided to make a copy of this topic and place it in the Complications during Pregnancy forum, perhaps there will be advice there. A shadow copy will remain in this forum.
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replied April 21st, 2010
Experienced User
I am so sorry this is happening to you and your family. My 5th child was diagnosed at 16 weeks gestation with Anencephaly which is 100% fatal. You know the devistation of diagnosis day. We, also, had to make "the choice". It is so very hard because CTT (carrying to term) just to watch your child die is inconceivable, as is the thought your child may be in pain. Truthfully, there is no "good" choice because the only choice of having a healthy living child is one that is not offered. Unfortunantly, no one can tell you what choice to make. I, too, wanted someone to tell me and direct me but no one can, especially no one who has never dealt with this, the unthinkable. I can only tell you what choice we made and why. We chose to ctt for several reasons. #1. I could not and would not be responsible for my child''s death. He/she would die but not by my choice. #2. To me, abortion would also cause pain and I could not intentionally cause pain to my child and if my child was experiencing pain due to the diagnosis, were better to be than cradled inside me. #3. My baby was going to die soon enough, why hasten his/her death. I was terrified to ctt but the funny thing was, this was one of the most wonderful and most spiritual times of my life. We did not want our son to suffer or have any unnesessary medical procedures so wrote a birth plan to ensure he would die comfortably. Our son was born prematurely and naturally at 36 weeks. Although he had no skull or brain, he was beautiful and he lived for 45 very peaceful minutes before he died in his daddy''s arms. I am very much at peace with Luke''s life and death. I am sure there are moms who have terminated who are also at peace with their decision. Here are a few sites: for moms ctt
http://community.babycenter.com/groups/a67 11405?intcmp=SPGroups_SPPhotoGroupsRelated Module_textlinks

for moms with poor prenatal diagnosis:
http://community.babycenter.com/groups/a90 245?intcmp=SPGroups_SPPhotoGroupsRelatedMo dule_textlinks

for moms who terminated:
http://community.babycenter.com/groups/a63 25?intcmp=SPGroups_SPPhotoGroupsRelatedMod ule_textlinks

for moms who ctt, there are stories of Triplody which may be similar?
http://www.prenatalpartnersforlife.org/
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replied April 22nd, 2010
Community Volunteer
I would like to add that you do need to take yourself into consideration, that means not only how continuing or terminating may affect your body, but also how it may affect your mind. Do a pro/con list. That may make it a bit simpler for you to decide.
You need to make the decision based upon what you, personally, can handle emotionally, and based upon what medical information your doctors provide you. Getting a second opinion never hurts.
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replied April 22nd, 2010
Thanks for the support and help. I am based in the UK, so the sites that are UK based should be of great help to me. I am unable to tell you what type of Aneuploidy as the doctor at the maternity unit at my local general hospital only sees cases as severe as Sam around twice a year. This is why they have referred me to a Fetal Medicine specialist. Hopefully, they will have more experience and will be able to give me better answers to my questions.

I am committed to getting as much information regarding Sam, his condition and possible outcomes before making any decisions on how to proceed with the pregnancy. Then I will be able to make an informed decision on what is best for all of us. Not some knee-jerk reaction based on high emotion at the time.
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replied April 22nd, 2010
Experienced User
BoltonLass wrote:
Thanks for the support and help. I am based in the UK, so the sites that are UK based should be of great help to me. I am unable to tell you what type of Aneuploidy as the doctor at the maternity unit at my local general hospital only sees cases as severe as Sam around twice a year. This is why they have referred me to a Fetal Medicine specialist. Hopefully, they will have more experience and will be able to give me better answers to my questions.

I am committed to getting as much information regarding Sam, his condition and possible outcomes before making any decisions on how to proceed with the pregnancy. Then I will be able to make an informed decision on what is best for all of us. Not some knee-jerk reaction based on high emotion at the time.


When we were given our diagnosis by first thought was to do anything possible to get out of this situation. I also detached myself from my pregnancy. I had four other kids so my main concern was how this was going to affect them. I talked to several people but none of them were much help as they had never dealt with this. None of us knew anyone who had. If you decide to ctt, I can help you with resources, since I didn't terminate, I don't know those resources. You are right though in taking your time and doing your research.
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replied April 22nd, 2010
Sam is our first baby. My mum said that it would be easier to detach myself from the pregnancy but I am unable to do so. Even though I wish Sam was healthy, I wouldn''t take back the time I have with him. I relish every kick and movement I feel inside me and have spent all my time showering him with love and attention.

We have been given a child who unfortunately will never experience life but still feel truly blessed to have been given the opportunity to know him and to have him enrich our lives so much. This experience has also reinforced how supportive, caring and understanding our family and friends are.

I have unable to find many resources on the chromosomal aspects of Sam''s prognosis as it isn''t a definate diagnosis as yet. I have found some great support groups relating to Hydrops Fetalis (the fluid build-up Sam has). ARC has also been extremely helpful and are sending me more information regarding ending or continuing with a pregnancy that has a diagnosis of severe fetal abnormality.

I have also researched Hydrops Fetalis and have discovered that I am susceptable to "Mirror Syndrome" - where the mother experiences symptoms similar to Hydrops Fetalis. The risk for this condition gets greater the further in pregnancy you are. This can result in pre-eclampsia and kidney failure and can be potentially life-threatening for the mother.

If I decide to continue with the pregnancy then I would really appreciate any resources you have. Thank you for your understanding and non-judgmental approach you have to giving me advice.
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replied April 23rd, 2010
Experienced User
When we were given Luke's diagnosis, I didn't know much about the internet and there weren't many resourses available, even on the net. I vowed not to let another mother deal with this alone like I did. Don't get me wrong, my dh and family were very supportive but I still felt so alone, like I was the only one who this happened to. After Luke's birth and death, through the internet, I found many other moms who faced the same decision. Several of us willingly shared our stories and the support groups on the net grew. From that 3 books were written to support other moms facing this decision and tips to help ctt if that choice is made. Unfortunantly, termination is the first recommendation doctors make in many cases and in some, ctt is never mentioned. I can totally understand wanting to terminate, heck, if someone would have pointed to a door that day and told me to go through it and everything would taken away, I would have. When the doctor mentioned termination, I didn't even understand what he was saying and I'm a nurse for heavens sake. I was in such shock with being told my baby would die and then told we had to make a decision. I am so glad we had time to absorb this. I am also so glad I ctt. It was the right decision for us. While ctt was hard, it was also joyful and very spiritual and I had no doubt my child was comfortable and he certainly was loved. While I can't and never would attempt to tell you what choice to make, I am always here to just listen if you need to talk. Just having someone understand sometimes is a relief.
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replied May 13th, 2010
late miscarriage
i was told at my 20 week scan that everything was fine but as the sonographer could not see everything he referred me to the fetal medicine unit . at my 22 week scan i was told that i had anhyrdramnios (no water in the amniotic sac) and therefore babies lungs would not develop. he had no chance of living even if i carried him to 40 weeks and would die within 30 minutes of birth, i did consider carrying him to term but was frightened off because the midwife told me i could get infection which could lead to infertility. i felt i could not kill him with a feticide injection to the heart. they recommended i did a cvs at 22 weeks and 2 days later was informed that he also had down syndrome. i read that 80 percent of down syndrome babies miscarry before 12 weeks but mine was surviving and possibly could survive much longer. my brother who is a doctor told me that i was suffering a late miscarriage. the midwife told me that the baby would probably die during labour induction or within 30 minutes. i was persuaded that feticide was the more humane option. there was a lot of pressure to go ahead quickly before 24 weeks after which my child would be classified as a still birth (before 24 weeks it is called non viable fetus) and you do not need to register the birth and the death or arrange burial which costs a bit. in the end i did everything as advised by midwives. i felt so guilty afterwards, and grieved a lot, still grieving, but i feel that my child would have felt more pain if he died outside the womb being incompatible with life, and that having not taken his first breath of air, it might have been less painful without gravity. it is my pain, my sin and my grief, and even though i was pushed by everyone to take the decision, i still allowed them to take the decision for me and my child. this somehow fills me with pain, as after labour induction he looked perfect and i still believe that the diagnosis could have been wrong although unlikely, there is always that 2 percent chance that it was. at the same time, the grief and pain would have been almost unbearable to carry him for another 20 weeks with the extremely poor prognosis. my religion somehow justifies what i did, and really my actions were not my decision but based purely on what the doctors diagnosed and advised. i at the time believe they know best and what is more humane for the child. that is why i did it, although i dont know if that was the right decision or the wrong decision till now. but even after i was pressurised by family and friends to just move on with life, and there is no other option but to do that. it does feel like life is so cheap!!! but i guess it was a very late miscarriage, at 23 weeks and i always try and convince myself of this. the midwife told me that life is a miracle and sometimes you are just unlucky and it goes wrong, but next time it could go very right, When God creates a human being, he also gives them a lease of life, for some it is less than 30 minutes and others it is 90 years. at the end, your child was given a very short life on this earth by God. whatever you choose neither is your choice because it really is not your choice. your child is incompatible with life like mine was. it does not mean that this will be the case next time.. in some ways it might be more painful for you if your child was born with severe disability in that he was compatible with life, as this would have caused you pain daily. i have a member of my family who has this pain each day and will for as long as they live. so sometimes you just have to accept what is given to you, and be thankful, since in some ways i see Gods mercy because if my child was compatible with life, i would have carried him to full term and then my life would have been very difficult. i pray that next time it will be perfect. you just had bad luck this time for me it was also a wake up call because i started to question what i was doing wrong in my life
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