Making Difficult Decisions Siggy Warning

stephaniedavideliuk · September 2014

Hi ladies,

I don't know if any of you have had any experience with this but I would love some advice. My husband and I are expecting our third child and we just found that our baby as not developed half of it's diaphragm. I am 19 and a half weeks and we are absolutely devastated. We have a meeting with a Genetic Counselor and an Amnio on Tuesday and if they confirm the severity of our child's issues we will be faced with the choice of having to end our pregnancy now or carry to full term know that the chance of survival is very low. I am honestly so overwhelmed and hoped to never have to join you ladies on this board. I am so sorry for all of your losses and hope that someone may be able to shed some light on our situation.

Thank You.

ikrystal · September 2014

**ticker warning**

I do not have any advice either, but I wanted to let you know I am thinking of you and your family during this difficult time.

kflynn81 · September 2014

I'm so sorry getting that sort of news is extremely difficult. Our son was diagnosed with a brain malformation around the same time although we had to induce his delivery because I developed preeclampsia. I know that trying to make that decision between carrying a child you know is ill and ending the pregnancy is the most awful gutwrenching decision in the world. If it helps, Google "All that Love Can Do" its a website that features parents who chose to carry children that weren't expected to live. Its been of help to me I hope it will help you a little as well.

OSUWifey09 · September 2014

***SIGGY***

I have no advice but am so sorry you are facing such a difficult decision. We are here to support you, no matter what decision you make. *hugs*

stefuge · September 2014

I don't have any advice or experience to share, but I am so sorry you are being faced with this impossible decision. We are here whenever you need us.

CherryPicked · September 2014

I'm so sorry that you are in every parent's nightmare where there is something wrong with your baby. I faced a similar decision with my daughter. We found out that she had Trisomy 13 at 20 weeks. What was best for our family was to carry her to term and give her a chance at life. We are so happy that we did, because our sweet daughter had 58 beautiful days with us and we made so many memories with her that we will always cherish. She is proof that miracles do happen and she outlived most statistics about her condition.

As we had to make these kinds of decisions, I remember feeling that there were no right answers. Doctors couldn't tell me if one scenario or the other would lead to more or less pain for her. As you start to come out of the fog that you get with this kind of news, gather your questions and ask them when you meet with the genetic counselor and have the amnio done. Gather all the information that you can, and then make the best decision that you can for your family. Any decision you make will be made with love.

Sorry that was long-winded but I feel for other parents making very difficult decisions. I hope and pray for you that the genetic counselor appointment and amnio results show that it is not as severe as once thought. Feel free to private message me if you want to talk more. ((hugs))

erinel · September 2014

I'm sorry for your tough news. I have a good friend that is with her daughter in the nicu now with the same condition (diphragmatic hernia). They gave her a less than 5% chance of even making it to delivery, and now her daughter is 7.5 months old and getting stronger by the day. It hasn't been easy, as I said, they are still in the nicu, but I know she thinks it's worth it.
Also, while on vacation with DH, we met a mother and her 17 year old daughter who was born with cdh. The daughter is now beautiful and healthy, although the mother did say the first five years were tough.

jess123456 · September 2014

I am so sorry that you are faced with these decisions. It is heartbreaking.No parent should ever have to make these decisions for their child.

We lost our daughter to a fatal trisomy in 2012 and were also faced with the decisions. For me I found that it helped to get lots of opinions from medical professionals and to have further testing done. I wanted to be sure that I had all the information possible and that we educated ourselves enough on her condition. Whatever you do decide know that it is the best decision for your family regardless of what anyone else thinks is right or wrong.Again I am so so sorry that you are faced with this and will keep you and your baby in my thoughts and prayers.

stephaniedavideliuk · September 2014

Thank you so much for all of your kind words. It really helps to know that others have been faced with type of decision and have come out on the other side. I had coffee with another friend of mine last night who also suffered a late loss and it has really helped to talk about it with those who understand. I am really hoping for a small miracle and will keep everyone up to date.

Thank you again.

cdale86 · September 2014

I am so sorry that you are going through this. Our son had a very rare set of birth defects called Pentalogy of Cantrell. We found a large omphalocele at 12 weeks and then a diaphragmatic hernia and heart defects at 23 weeks. His stomach and intestines were in his chest (possibly some of what your child may have going on). I know our situations are totally different. We did not elect to do genetic testing because I had bleeding throughout my 2nd trimester and the results would not have changed our decision. Our son was a twin and we were advised to terminate as he posed a risk to his sister. For our family, we chose to carry to term (well we only made it to 32 weeks). Our son survived 5 hours and I would never change our decision. The doctors had pretty much given him no chance so we prayed and hoped for a miracle. We just felt like we had to at least give him a chance to fight. I hope this is not taken wrong by anyone, but I do feel that our friends and family probably accept Bennett more as a part of our family than if we had chosen to terminate. I am by no means trying to say that there is a right choice. It is very personal for each person/family. The thought of how your child may be received by whichever course you take may be something you want to consider. I will tell you that the time I had with my son and the pictures I have of him are priceless. I enjoyed the time during my pregnancy to get to know his personality a bit too. Just some thoughts. This may not be edited well. Again, I'm so sorry that you are having to deal with this. The loss of a child and/or a child with life threatening issues is a nightmare for any parent. No matter how you move forward, your love for this child is so clear and undeniable.

jenandbrett · September 2014

I am so sorry. I know the heartbreak and confusion you are feeling right now. My son was diagnosed with a life threatening disease at 20 weeks, too. We chose to let him live as long as he could and he lived for three hours outside my body. I am so grateful for that decision. He was amazing. We made memories and took pictures and cherished him. I will not pretend that the months of carrying him weren't incredibly painful, though. It was agonizing, but I wouldn't trade them for anything. I will pray for a miracle for your precious baby.