20.5 weeks may lose baby


#1

I just had my 20 week ultrasound yesterday, and they saw a severe heart defect - hypoplastic left heart. Basically, he has half a heart - the left side is not developing. “Best” case scenario is a 70% chance of surviving to age 5, and that’s only if he receives a heart transplant or a series of 3 open heart surgeries by age 4. Even if he did survive to age 5, he would likely need a pacemaker and additional heart transplant later. There would also be many other complications and co-occuring problems in other systems in his body.

This is so awful and sad, and I am learning about second trimester pregnancy termination.

This may have been my only chance at having a baby. I have three frozen embys, but my husband was against having kids, and I don’t know how likely it is that I will get to try again. This type of scenario was a the main reason he was against the idea in the first place.

I literally set up his nursery the DAY BEFORE the ultrasound. I am devastated and confused. I am really scared about what the procedure would be like.

I have an appt with a cardiologist today to learn more, but I’m expecting to not hear anything positive.

Is this topic too horrible for this forum? I’m not sure where to post.


#2

I am so, so sorry to hear that your baby has this condition. I am a cardiac ultrasound tech so I am familiar with hypoplastic left heart syndrome and have scanned many children with it. The survival rates after surgery are much higher than they were in the past and I just last week I had a beautiful and precocious 12 year old girl who had been diagnosed at birth. Babies with this condition go through an awful lot in their lives, but still can become normal, happy children. I hope I don’t sound insensitive, I only want you to know that I understand and I don’t know what I would do in your position.

You have an extremely hard decision to make and I’m so sorry that you have to go through this. I just wanted to let you know that I’m thinking about you and I hope that you get some answers and maybe some peace in your decision after speaking with the cardiologist.


#3

Your situation is one of my worst nightmares. I am so sorry that you have to go through this. I do not know much about this and I did do a little research. I looked at Mayo Clinic (renown hospital in the Midwest) and they do these surgeries all the time. It appears that there is a 70-75% survival rate during the first year of life. Please get second opinions and talk to some major hospitals that know what they are doing so you can make an informed choice. From the little I have read it appears that the majority of children that have surgery live normal lives. Major clinics can give some real statistics. The choice is yours and yours alone and what ever you choose will be the right choice. :grouphug: :grouphug:

Keep us posted!


#4

I’m so sorry for your news and can’t imagine what I would do in your place, but I wanted to echo what the previous posters said. I’m a general pediatrician and have taken care of 3 or 4 children with HLH and they’ve all done well. None of them have had transplants, they’ve had the stepwise surgery that the cardiologist will, I’m sure, discuss with you. I know it’s difficult to see any child go through such major issues so early in life, I can’t even imagine if it’s your own child, but children’s hospitals are really focused on pain management and helping the older child through play therapists and child life specialists who help them understand what’s happening to them through the process.

I hope the cardiologist can give you more information to bring you peace, no matter what you decide :grouphug:

Heather


#5

I am so sorry to hear this:( I definitely agree with the other posters–definitely go to the top doctors for second opinions! I was born with a heart defect (not as severe but they weren’t sure when I was born) and had open heart surgery so I know a little bit about it. One doc had my parents completely flipped out about the surgery and so we went to one of the “best” surgeons and he said oh that surgery is nothing and very routine. It turned out to be routine, but probably only because I was in one of the best doctor’s care. Either way, I am so sorry to hear about this and will be thinking of you and your family.


#6

My nurse’s son has this heart problem too. He is now 6 years old. He is doing well, but has had multiple surgeries.
I will pray for you and your baby.


#7

I don’t have any experience with this, but wanted to let you know that I will be thinking about you and praying for you and your baby.


#8

jflower, I am so sorry that you have to go through this. Having a difference of opinion on the child issue with your spouse only compounds the stress I am sure.

Please take a look at my signature. I had a d&e my first pregnancy due to genetic issues so I can tell you a bit about that procedure. That being said I hope you don’t have to go down that path. Every couple has to do what is right for them and what they feel is right for their baby.

I have a four month old that had open heart surgery at 12 weeks so I can tell you a bit about that as well. While she had a different type of operation the stress is largely the same as well as many of the aspects of the surgery (stopping heart to perform surgery, blood transfusion). I don’t know everything but I can share what we have overcome thus far.

I don’t want to scare you with my two experiences, I am told having two pregnancies with babies that having genetic issues is like hitting the genetic lottery. Many women will have heart breaking complications with one pregnancy and have a perfectly healthy baby/pregnancy the next. I mention this because it sounds like you are already thinking ahead a bit to help make your decision.

You can respond here or PM me if you want a bit of privacy.

How did the cardiologist appt go?

I will pray for you and your baby.


#9

Please get a second opinion and don’t lose hope. You are in my thoughts. Please update after your appointment. :grouphug:


#10

Thank you for your responses. You guys are great at looking for the positive spin, which is a nice quality. However, we are going to end the pregnancy this week. I am devastated.

I am glad that some of you know of children with heart defects who survived, and I am happy for those families.

We are not able to cope with the idea of serious odds of death and 100% odds of three or more heart surgeries plus a lifetime of unknown length and constant medical care and complications, which is 100% what we would be facing.

Different people would make different decisions in our place, I know. It was hard posting this topic in a forum where I don’t know the respondents (compared to my due date group which has moved to Facebook, and who I know). Thanks for your efforts to help me. I am very sad and scared.


#11

Dear JFlower,

I too, ended a pregnancy, and it was a very, very difficult choice. At the time, carrying out the pregnancy seemed like something I just couldn’t do and I often look back and wonder what my life would be like had I made a different choice. It took me years to recover and I still am filled with regret, shame, and the inability to forgive myself. That was 11 years ago and we are still in the hopes of having a child.

I know you are scared. Is it possible to give yourself a little more time to make sure this is the choice you want? I’m not trying to influence you either way. Ultimately, you must choose what you think is best. But perhaps a few more days, a week? Just to make sure you are ok with whatever you decide.

I will pray for you. I am sorry that you have been given this terrible test. This sad, sad test. Please know, that whatever you decide, I am here if you want to talk. You can always message me.


#12

JFlower - so sorry to hear about what is happening. What ever you decide to do will be the best decision. :grouphug:

Based on your first post: One thing that I would highly recommend is that you and DH go see a counselor about all of this (infertility, having children or not having children, losing a child, etc). I lost a little girl in Feb. to Turner’s Syndrome. It was very hard on our marriage and I became obsessed with having another try at a baby. My obsession pretty much tore apart our marriage because I stopped listening to DH’s needs. It was all about baby, baby, baby. DH and I started counseling about two months ago to see if we can salvage our marriage. :cross: One thing the counselor asked us was why we waited until things were so bad to come see her… I am happy to say that I am pregnant with a little girl but on the flip side DH is pretty much out the door. This is not how I wanted my “family” to turn out. Single, knocked up and turning 40. Just don’t turn out like me!!!

If you still have some embies in the freezer maybe take a few months off of the baby mission to concentrate on you and DH. Rediscover why you fell in love in the first place. I sure wish that I had… maybe I would have seen how unhappy all of this was making DH. If DH doesn’t turn around then you can decide if you want to make a go of it by yourself.

Again, I am sending you good vibes your direction. Get a second opinion like some of the other ladies have suggested. Hang in there!

:flower:


#13

What ever you decide is the right choice for you. I just wanted to throw another option out there. I know this may not be appropriate and I do not mean to offend you at all as you are going through such a difficult time and I am so sorry. Well here goes…Have you thought about adoption? By this I mean there may be another family willing to take on the responsibility of following through on all the medical procedures and taking the risks with this little boy. I know it would be painful to go through the rest of the pregnancy, but I honestly just wanted to let you know that there are many families out there that would be willing to adopt a child with this heart condition. Termination may not be the only option.

Again this is your baby and you have to do what you feel is best. I will be thinking of you and I hope that find peace with your decision regardless of what it is. Like I said before the choice is yours and your husbands and what ever you choose may you have peace with it. :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: