I don't know where I belong... **ticker**

Jesse835235

I've had such an emotional rollercoaster, that I know many of you identify with.  I'm not sure if this is the appropriate place to post or not.

Our A/S on Feb. 4 showed that our baby boy had a large heart with fluid around it.  Not to get into too many details, but after traveling thousands of miles to two major medical facilities for options, it was determined that our son has a very, very large aneurysm on his heart.  This is leaving little room for his lungs to develop in addition to the heart issues.  On top of the aneurysm, hydrops are in their early stage.  There is no chromosomal or genetic abnormalities.  They chalked it up to a very, very rare occurrence.

They offered us an open fetal surgery as an option to get through the pregnancy.  They have no idea if it will work as they have never done this type of open heart surgery on a fetus before and they also cautioned if it were to be successful, that they have no idea if he will live past pregnancy.  If we choose the surgery, I would likely lose my job and our insurance because I would have to relocate 800 miles away.  Plus, we haven't been told the financial implications of the surgery.  I have an ant. placenta, so they would flip over my uterus and make an incision in the back in order to access him for an operation.

Surgery may not be the rational decision and I feel horrible for not trying everything that I possibly can to save him.  I welcome others' opinions, even though they won't sway our decision.  I would just like to hear your thoughts because you can relate more than anyone else that I've talked to.  Would you/have you gone through with a surgery like this?

He is so active and he is always kicking me.  It breaks my heart to think of him passing.  If surgery isn't a good option for us, we have decided to carry him until he is ready to go.

All of our situations are horrible and I am so sorry for all of your losses.  I'm sorry for posting here right off the bat, so if I am out of line at all.. please let me know.

jess123456

I am so sorry that you are faced with these very difficult decisions. We lost our daughter to a terminal diagnosis and there was nothing that they could do for her before she passed away because it was chromosomal. She did have hydrops but that was just part of her diagnosis. Looking back now and at the time I would have done anything to save her but there was simply nothing that could be done.

This is such a tough choice and only you and your husband will know what's right for your son. I wish I could be of more help to you. You guys are in my thoughts and prayers.

CRUN2012

Im so sorry that you are in this difficult position and facing tough decisions. It sounds like you've gotten some wonderful medical advice and went out of your way to get this.
In my opinion I would probably opt out of the surgery simply because it sounds like it would cause a huge ripple of chaos in your life...with that said losing your baby will have the same effect.
I can't really offer any better advice than to do what is best for you and your family. Ultimately you will know in your heart that you considered all of the options and possibilities and you made a choice based on that. Your son will also know the love you have had and will always have for him.
Whatever you decide I hope that you find peace and please know that you can use this board as a support system whenever necessary.

ikrystal

I'm sorry that you have been put into this decision.  With the loss of my twins, I didn't get a choice. It was handed to me.  I don't know what I would have done if I were given the choice you have been given.

All I can say - and this is just my two cents - is that I wish there was something we could have done for our boys.  I would have done anything to save them.  Now that they are gone, if we would have been given the options you have, I probably would have gone with the surgery and prayed and hoped for the best.  But had I not gone through a loss, I might have said that it might be better to just let nature take its course.  

I think that you deciding to carry to term if you don't do the surgery is an amazing thing to do.  I only had 2 hours with my sons after they were born, so I treasure that time I was pregnant with them even more.  I still got to know them during that time, and I think they got to know me. I also think not letting opinions sway your decision is the right thing to do. Good luck to you, whatever you choose to do. You are his mother, and only you will make the right decision for him.  I have no doubt it will be the right one. 

kz's_girlygirl

This is definitely an awful situation to be in, and I am so sorry you are being faced with these difficult decisions!

As far as losing your job/relocating- I assume your relocation would be temporary in order to receive treatment?  You may be able to take FMLA leave, so I would check into that at your job if you choose to go forward with surgery. 

There are a lot of "if's" with any situation like this, and I know you are willing to do anything and everything in order to save your baby like any of us would. 

IF I were in your shoes (and I never have been, so I don't know what I would choose for certain)  I think I would research a few things related to the surgery as much as possible:
-details of the surgery and recovery for baby and for you
-desired/intended outcome for baby and for you
-Probability that desired/intended outcome will be achieved
-If desired outcome of surgery is achieved, how will the rest of the pregnancy be affected
-If the desired outcome is achieved, what other medical treatment may baby (and you) need upon birth/after birth.
-Prognosis for baby and you if surgery does not produce desired/intended outcome

-Chances of full term birth without fetal surgery/course of action after birth.

veetveet

I am so sorry for what you are going through. It is terrible for anyone to have to go through these situations. I was in a similar (yet different) situation and terminated my pregnancy last week at 27 weeks. Absolutely devastating- but it was the most peaceful option for my son. (Me.on the other hand- not so much)

It's such a personal decision. I would personally go for the option that would bring the best quality of life for everyone.... but quality of life for me and quality of life for you may be 2 different things.

I wish you much strength at this time.

VyD81

I'm sorry you're going through this. I agree with @kz's_girlygirl, explore all your options and make the best one for you and your family. 

Hugs. 

jonahsma

Im sorry you are faced with this decision, Im sure whatever choice you make will be the right one for you and your family .. You are in my thoughts and prayers.

ajsweeton

Ticker warning
Pregnancy mentioned


I'm so sorry for the diagnosis you've been given and the decision you now have to make. I actually know someone who had intrauterine fetal surgery because her son had fluid around his brain and they put a shunt in it was the first surgery of its kind at the time. It's not an easy decision to make and it's not always an easy recovery, but 15 years later she still has her son. Because I have been through a loss I feel like I'd do anything and everything I could to prevent it from happening.
In this current pregnancy I was willing to have a cerclage placed and also to be on bedrest for an extended period of time if it would keep these babies alive and growing inside me. I know that's not the same, but my job may have been in danger if I'd been put on bedrest early and I would have done it. I hope you're able to make a decision you can be at peace with and that if you do decide to go through with the surgery that the prognosis is a good one. I'll be thinking about and praying for you.

bunnybun4

I am so sorry you are faced with this difficult decision...I don't think any of us can honestly make the choice for you...it's so personal.

I would encourage you to try and seek multiple opinions from professionals.  This kind of surgery was mentioned for my baby (totally different diagnosis) but was not recommended.  We ended up speaking with a MFM, a neonatologist, as well as 2 OBs for second/third/etc. opinions.  Hearing all of their professional opinions (which were basically the same) really helped us make all of our impossible decisions.  If you got back up from other dr's for the outcome of the surgery it may make you feel better.

t's and p's for you.  ((HUGS))

eta: I just wanted to be clear my baby's surgery would not have been on her heart so it would have been completely different than yours...it would have just been fetal surgery. 

Jesse835235

I appreciate the insights everyone had to offer. Like I said, I definitely don't expect anyone to make this decision for me, but it helps to see various perspectives and just to see if anyone can relate. I'll be able to talk with work more next week along with the maternal fetal center some more regarding cost. It definitely feels like this isn't real life. We've met with boardrooms full of 20 experts in their specialties. It's been excellent care... I just wish I had a crystal ball on if it would work or not. Thank you so much. I'll keep you posted on what happens.