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encephalocele & Diaphragmatic Herni
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Gonnamissmyson posted:
I had posted this in another room but someone told me I may get more peope here who have had to make a deciscion like this....

So I am a mom of a wonderful 8 month healthy baby girl. I found out I was pregnant with baby #2 a couple of months ago. I went to get my first ultra sound done just 2 days ago, I am about 19 weeks. I was so excited and nervous. I was wondering the whole time, is it a boy or is it a girl? I was hoping and praying for a boy! Finally I get called back and the nurse is taking a look at my baby. I see the hands and feet moving. It was so sweet. She then says she is going to call the Dr to take a look. He comes in and tells me the best news ever.. ITS A BOY! My heart started racing I was so excited!! I couldn't wait to tell everyone!!! After it was done he helped me sit up and looked at me and said, "we have a couple of major problems we need to discuss" I said ok. He said that my son has a encephalocele in the back of his head and is fairly large. I had no idea what this was. He said its a condition with there is a gap in the skull and brain protrudes out. Ok. Then he says... Your son also has a Diaphragmatic Hernia. I knew what this was because I have a good friend that has a daughter with this condition. Its where there is a whole in the diaphragm which cause the stomach and intestines to going in the chest. I was shocked. I didn't know what to say. I was there alone while hearing this information. The dad is away and couldn't make it. I was so scared. The Dr said that my son after birth will not survive. I was devastated. He wanted me to speak to the genetics counselor. After speaking to her I realized there is a decision I have to make... and SOON. Will I continue with the pregnancy, or terminate it??? I cant believe what I am having to think of. Do I see my son die now or in few months. I am so confused and heartbroken. I dont want to go through these next few months feeling him inside me and knowing soon after he is born that he will pass away. But I also cant fathom having to terminate the pregnancy early either. I just dont know...
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NCOArmyWife responded:
I wanted to tell you that I am soooo sorry that you are having to go through this. I've never been in anything close to your situation, and I can only imagine how hard it must be.

That being said, all I can tell you is what I would do in your position. First, I would research the conditions and learn everything there is to know about both of them. I would make sure that there are absolutely no other options besides the ones presented to me. I would probably even seek a second opinion. Finally, I would discuss my situation with a trusted religious/spiritual advisor like my pastor, who could help me see it from all sides and provide another viewpoint.

I hope I haven't upset or offended you in any way with what I've said. Once again, I am so sorry that you are being faced with this situation. I will keep you in my thoughts and prayers.
 
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Gonnamissmyson responded:
Thank you so much. I was not at all offended. I enjoy hearing the advice of other people. Thank you again so much.
 
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FloralMom responded:
I'm so sorry that you are going through this.

I am in a similar position - my LO has Anencephaly - it's a severe neural tube defect, like spina bifida, that causes the brain and skull to stop developing. Esencially, the top of his head is not there. When we were told this news we were, like you, devestated. Dispite our religious beliefs both my DH and I wanted this baby out as soon as possible (like he was a cancer or something)... but once we got home, we knew that we couldn't do that to our child. We decided to carry full term. I'm actually going to be induced in a few weeks, because with his lack of skull, he won't be applying the same pressure as a normal baby, and my doctor doesn't think that I will go into normal labor on my own, even after my due date.

Honestly, I think I made the right choice for us. I feel him move and kick inside of me and I know at least for the time being, he's alive and I'm keeping him safe.

I don't know what your religious beliefs are, but I know that we have been granted an amazing peace this last month or so leading up to my due date.

Did your doctor explain why or what would have caused this? It turns out that mine is most likely due to a genetic disorder that I have known as MTHFR, my body doesn't absorb Folic Acid properly. I am now on a "super vitamin" to correct that, but the "damage" is already done and that vitamin deficency is most likely the cause of my miscarriage as well.

I have heard both sides of the case - both carrying full term and early termination, and the one thing that has stood out the most to me is that the moms that chose early termination now deal with incredible feelings of guilt over not letting nature run it's course. After all, if you had a living child with a terminal illness, wouldn't you let the disease run it's course too?

You aren't alone - that doesn't make it easy, but it does help with the feeling of abandonment & isolation.

Again, I am sorry that you are faced with this decision - and don't know if what I've had to say even helps, but you have come to a great place for support with either decision that you make. My heart truly breaks for you!
 
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juliehirtz responded:
First of all...no words I say can ease your pain or make your decision easier or make the rest of your pregnancy happy. Trust me...I've been there.

At 28 weeks, my son was diagnosed with full T18 about would only live for a short period of time if born alive. I, too, was faced with the question to induce early or carry to term. I can only tell you my personal decision...I wanted as much time with him as possible. I chose to carry to term. We made it to 35 weeks before discovering he had gone to sleep. I treasured every kick, every picture on the ultrasound, every move. Our doctors were great...once we made the decision to carry to term...they offered extra ultrasounds to see him. It was great. When we delivered our son, still born...it was the greatest moment. I wasn't delivering a child that had passed away...I was delivering MY son...I got to hold him and everything. It was a great moment and one that has provided me comfort throughout the past year...I think if I had decided to induce earlier...I would have missed out on all those things.

We are coming up on his would be 1 year birthday and I don't regret one decision that we made. My arms still feel empty at times without my son. But trust me when I say, the next child (and there will be a next one) will be no less of a blessing. We had not decided whether or not to try again...when I surprisingly found out I was pregnant...This child's due date is the exact same original dute of the son I lost...tell me God doesn't work in mysterious ways!

Your heartbrokeness will not ease once you make the decision. It was go on for a while...but each day gets better and the day after that gets even better.

Take one day at a time, treasure the memories made. Either way, remember your son...we have pictures displayed and everything...no one is afraid to mention his name at our house. The baby is now as he will be always...YOUR son.

I know how much it means to have someone to talk to. It helped me through some of the roughest days after delivery...if you ever need anything...please don't hesitate to email me personally (jhirtz@fidmail.com). I'll give you my phone number there if you want to talk.

God bless. I WILL be praying for you. Hold onto the baby's dad...he will likely not express his loss the same, but will be hurting just the same as you. Hold onto each other, hold onto your faith, and hold onto your son for however long you can.
 
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GabbyBen responded:
Hi, I just want to tell you that I'm feel really sorry about what is happening to you, I was in the same situation the last year and I would like to share with you my experience. Please send me an e-mail or tell me how I can contact you to talk more about it. my e-mail address is p_gabby@hotmail.com
 
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momoftype2toddler responded:
I wanted to send my condolences and say that I know what you are going through as I am going through it right now myself. While we are not dealing with Encephalocele, we have a pretty severe case of Spina Bifida that has brought us to the point of continuing or not. We already have a child that has medical conditions that require constant care and realizing that I need to work full time to cover those expenses and carry our insurance we are pretty certain that even if we did continue and the baby lived, we could not properly care for it. This pregnancy was not planned and will be my last, not that is what makes it any worse. The thought of leaving this child is what is the worst. No one should ever have to make that decision. I am still in the angry faze of my grief so I won't elaborate on my feelings as all I wish for you is that you feel peace and know that strangers are praying for you too.
 
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MirandaRenee responded:
Hey so I know I am going on a long shot here seeing how this was four years ago but I was wondering how everything turned out for you birth wise and if your son was able to have the encephalocele surgery by any chance. Hope to hear from you I found out my son has this and there is a chance he might can have surgery but they say that in most cases if your lucky infants only live a few hours. Thank you.


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