Cystic Hygroma & Pregnancy Termination - Other Experiences? :(

Updated on September 25, 2016
E.M. asks from Brooklyn, NY
15 answers

Hi moms. It's been quite a long time since I've posted. But I could use some support, especially from anyone has been through a similar situation.

I had my 12 week ultrasound yesterday, and unfortunately they found a large cystic hygroma going all the way around our baby's head and down its back, with a NT measurement of 7.8mm. We spent a long time meeting with my gynecologist, geneticists, and the head of OB at the hospital who has over 30 years experience. The prognosis is not good at all. Everyone was wonderful, kind, patient and also very honest about our particular situation, and ultimately my husband and I concluded that terminating the pregnancy is the best decision for us.

This is by far the most difficult decision we have ever faced, and we are completely devastated. While we feel confident in our decision, it is still a terrible one to have to make. Please don't criticize our decision or regale us with stories of CH that turned out to have a good ending; we are already hurting enough and are making our decision based on the particular facts of our specific case. I know there are some that would choose differently even in our situation, but this is the choice that is the most right for us.

I'm not sure what I'm asking, or what I should ask. Is there anything except time and lots of tears to help get through the loss of a pregnancy? Has anyone else had to make the decision to terminate a pregnancy for medical reasons, and if so is there any advice or kind words you can share? I know many people who have experienced miscarriage, but nobody ever talks about termination. I don't know if it's because it's so uncommon (well, I'm sure it's uncommon and would certainly hope so, but...), or if it happens but rarely is spoken of because it's such a difficult thing. I'm feeling very lost and lonely right now, and any kind words would help.

Thanks.

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So What Happened?

Hi ladies,

It's been a little while since my post but I wanted to follow up.

First, I want to thank everyone who responded so much for your kind words and virtual hugs!! Really helped a ton to have that kind of connection during this very difficult process.

Second, we got the results back from what caused the hygroma and it was Trisomy 18, which is less common but far more problematic than Down's syndrome. The vast majority of babies with this diagnosis die in utero, and of those that make it most only live a few days or months, requiring multiple surgeries and varying degrees of life support, with limited awareness of the world around them. This diagnosis really brought a lot of closure for my husband and I; we wouldn't have wanted our child to suffer through that kind of life experience (again, I know some would choose differently in the same situation. I'm convinced after this experience that even God doesn't have a blanket, one-size-fits-all answer of "all babies must live always no matter what"; in situations like these there is no definitely-right or definitely-wrong answer). I feel our little one's entire life purpose was fulfilled in the course of 12 short weeks: amongst other things, to teach us that we have the capacity and desire to love as parents, and to experience what that feels like on many levels. We have grown as people in ways we would never have without our little one, and they will always be a part of our family and of who we are.

Also, aheartbreakingchoice.com is a great resource for anyone going through this kind of experience. The thing we felt most besides devastation during this process was loneliness, but the truth is many, many people face this kind of decision all the time, and it's really helpful to know you're not alone.

Thanks again everyone - much love to this community!

More Answers

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S.F.

answers from Phoenix on

My heart hurts for you and because of that I'm going to share my story with you. 6 years ago I was pregnant with our second child. Our daughter was 6 and my husband and I were both excited and nervous since I had been extremely ill during my first pregnancy with hyperemesis gravidarum. It was pure torture. This time we readied ourselves with specialists and medication. I hoped so badly I wouldn't get sick but I did and it was even worse than before. I received home iv therapy and a medication pump but it didn't help. Nothing helped and I was wasting away. I became extremely depressed and just wanted to die. At 10 weeks my wonderful doctor finally told me the baby couldn't thrive with my illness and that I needed to consider terminating in order to save my own life. I needed to be on major antidepressants which would possibly cause birth defects. We were devastated and desperate for me to be well. Even though our unborn child was loved and wanted, we decided to terminate. It was the hardest decision of my life but I knew it was the right decision. I searched for support groups for women who've terminated pregnancies but found none. Plenty for miscarriages but none for terminations. We mourn, too. We feel the loss as well. It's very unfortunate and I've actually considered starting my own support group. Hang in there and take one day at a time. Time really does heal. Sending positive energy and hugs your way.

11 moms found this helpful
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J.C.

answers from Philadelphia on

I am crying with you as I type. I am so sorry. I was faced with an horrible diagnosis during my pregnancy. We decided not to terminate however and my son lived for 17 days. There were no good outcomes regardless of the decision we made. Anyone who would dare judge your decision I would say have not walked in your shoes (or my shoes). I am just so sorry you are going through this. <<hugs>>

11 moms found this helpful
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S.W.

answers from Amarillo on

This is a personal decision that has taken quite a bit of deep soul searching and only the two of you know what your abilities are. Know that whatever you two decide, it is the correct decision. There will be grief either way. There will be pain from the loss. There will always be a void in your family. But there will be peace in knowing what had to be done.

My heart goes out to you and yours. A huge cyber hug to surround you and sending you and yours future joy and happiness. In the future if you need it, contact a grief support group.

the other S.

9 moms found this helpful

D.B.

answers from Boston on

My heart breaks for you. I commend you for reaching out for help, and I hope you will consider asking your doctor for a referral for counseling if you need it. There are groups or individual sessions for people in your situation or who have a fetal demise (and I shudder at the proposed laws saying that those pregnancies should be continued!).

I counseled many, many women who were seeking to terminate for a variety of reasons, and it was particularly painful for women who chose to terminate what had been a wanted pregnancy. There are two parts to the counseling: the before, and the after. Fertility is a complicated issue - there's the medical, the hormonal, and the emotional, and they are all mixed up together.

I think you will run into all kinds of "experts" who will give you the kinds of comments you've asked not to receive, and I know that will add to your stress and heartache. The truth is, no one knows unless they've been in your shoes...and even so, the shoes are uniquely yours in many ways. Adding to it are the judgments about women who terminate - a lot of people say "Oh, I would never, ever terminate" and the truth is, I counseled hundreds of women who had felt that way before their particular circumstances in the "real world" made them realize, "Oh, gee, you know what? This isn't nearly as clear as I always assumed it would be." Honestly, unless those people have adopted a whole bunch of special needs kids or dealt with a child in severe pain, they have no business getting in your face. It's the same idea as those who say to those who can't conceive, "Oh, just relax and it will happen. My cousin/aunt/neighbor just stopped worrying about it, and bingo, she got pregnant." Yeah, because those are the few cases where someone remembered the circumstances, and it completely discounts the millions who continue to struggle with infertility.

I guess I would just remind you that your body is yours, you have made the best decision you can for yourself, you have a supportive husband, and no one should sit in judgment. Please don't feel you need to listen to critiques, whether they are critical of your decision to terminate (the "how dare you, it's immoral" type) or critical of your grief ("It's not really a baby yet" or "you can try again soon" and so on). I think you can say, "This is not helping me now" and just walk away. It's okay, and don't worry about anyone else's feelings.

You might check with your hospital social workers, and you might make a call to a local chapter of Resolve. They are known mostly for dealing with infertility, but they also support women who have a pregnancy loss. Perhaps there is a support group near you.

Wishing you well. Please take care of yourself.

8 moms found this helpful

B.C.

answers from Norfolk on

I'm so sorry you are going through this but I believe you are doing the best thing you can for a very difficult situation.
You will grieve and you'll get through it in your own time - there's no set time table for this.
A grief support group might help you.

6 moms found this helpful

R.A.

answers from Boston on

I am so sorry. It must have been devastating to hear, and terrifying to make a decision like that one.. I only surround you with love, and hope that you and your family will be able to heal and seek counseling if needed. My heart and prayers go out to you and yours..

6 moms found this helpful
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E.B.

answers from Honolulu on

I'm sorry.

It sounds as though you have consulted the best specialists, and perhaps they can refer you to the social services at the hospital where they practice, who can help you locate a support group.

I hope that you and your husband find the love and support and encouragement that you need at this difficult time. I'm glad that your health care professionals have been patient and kind. That makes a world of difference.

5 moms found this helpful

E.J.

answers from Chicago on

I am so, so, sorry.
I cannot imagine your pain.
Words just seem so inadequate.

My only suggestion is to have the medical staff help you find a support group. There is something about being around people who have walked the path you are just starting on.

((Hugs))

5 moms found this helpful

C.B.

answers from Reno on

I only can say I am so sorry. My heart hurts for you, I can not imagine the pain you must feel right now. I wish I could just hug you right now. I do agree that a support group or grief counselor may be something to consider.

4 moms found this helpful
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P.K.

answers from New York on

Wrapping my arms around you. 😢😢

4 moms found this helpful
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E.B.

answers from Beaumont on

So sorry. Huge hugs.

4 moms found this helpful
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D..

answers from Miami on

I'm so sorry. It's a terrible decision to have to make, but continue to believe in your decision.

I think that a support group would help. Ask the hospital's social worker for guidance. There are people who go through this dark tunnel and come out whole. The people I have known who have suffered a loss have come through after a successful subsequent pregnancy. That might not be what you want to hear, but I do think that it's something you should hear. Too many people think that they can't go through the pain again and don't try for another baby. I believe that this is a mistake unless there's a genetic reason not to.

3 moms found this helpful
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S.B.

answers from Houston on

How gut wrenching for you and your husband. I'm so sorry. I will keep you and your family in my thoughts. Hugs!!!

2 moms found this helpful

S.T.

answers from Washington DC on

oh, my dear.
i am so, so sorry.
my heart is hurting for you.
wrapping you in soft warm astral blankies.
:( khairete
S.

1 mom found this helpful
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B.H.

answers from Los Angeles on

A MILLION [hugs] to you and your husband.

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