Losing My Heart

Diagnosis: Trisomy 21 and Cystic Hygroma

By Tlamb76

My husband and I had a son in 2006 and then a daughter in 2008. My daughter didn't achieve milestones as she grew. We finally had her tested and found out she had a deletion on her 22nd chromosome. After this I was determined that I would not have another child without seeking invitro with genetic testing on the embryos. However, both my husband and I were tested and both of us had normal chromosomes. After talking with the geneticist that sees my daughter, we were assured that the likely hood of having another child with the disorder was less than a 3 % chance.

Against my better judgment we decided to try for another child. I was anxious about it from the beginning but thought for sure we had to have better luck this time. After all, we were assured that it was just a fluke that it happened. We went to see about CVS (Chorionic villus sampling) testing. However, after being assured I would still be able to do it, we changed the appointment to a time when I was off from work. My daughter had just spent a week in the hospital so I didn't want to miss anymore time if I didn't need to. When we went, they determined by ultrasound that I was too far along for cvs testing and would have to wait 10 days for amnio, which they would do at my 15th week gestation.

At that same appointment, the doctor told us that they saw a thickening of the nuchal fold, and vaguely mentioned cystic hygroma. All the papers they gave us were on the nuchal translucency. The doctor told us it could be an immature lymph system, or related to a chromosome disorder. So now I was having to face the possibility of having 2 children that had chromosome disorders.

When we went home we started researching nuchal fold thickening. We saw that in many normal pregnancies you can see this. So I felt maybe there was some hope that everything was okay. However, when we went back for the amnio on December 30, we were told that there was a good size hygroma.  After the test we went home and researched cystic hygromas and found that the chance of survival was 2-9 % if there was no chromosome abnormality.  Things got plenty bleak after that. We were told we would have the fish test back by the next Tuesday morning. When I still didn't hear by lunch time I called. The genetic counselor was on vacation until the next week. The nurse told me they hadn't received the results back yet that maybe by the end of day something would come in.

At 5:32 that night my phone rang; I felt a sense of dread when I answered the phone. The doctor confirmed my worst fears, the baby had Down syndrome. The doctor then told me that with the size of the hygroma they did not expect a normal result. I asked him how big the hygroma was, because really I hadn't even heard it mentioned until the previous Thursday. He told me that it covered half of the baby's body. Of course I was already devastated at this point, and asked what the baby's chances of survival were. He informed me that it would most likely be still born. I hadn't even thought to ask what the sex of the baby was. I thanked him and told him I would need to discuss things with my husband.

We decided that termination was the best choice, though even now I don't know if it was the right choice. I didn't want to have to deliver the baby because I couldn't bear the thought of delivering a baby that would die or be dead. So I talked with the doctor. I was 16 weeks the day I found out. They would only do a D&E up to 16 weeks. After talking to the doctor I told him I did not want to have to deliver. He agreed to do a D&E. I went in Monday January 10, to have lamaneria placed, which was torture due to my cervix being way up and they couldn't reach it. After trying different things they were able to get it placed. However, knowing the way my luck was running, I should have known that it wouldn't be that easy.  The next morning what they had placed was coming out and I was leaking amniotic fluid as well.

They weren't suppose to do the procedure for another 3 days. Needless to say, it changed everything. Now I was no longer able to have a D&E, I needed to be induced. I do have to add that the doctor was wonderful. I was supposed to see one of his partners because he was off the day I went back for round two. I had called that morning and told them what happened. He came in just to see me. He also made a trip to the hospital to see me as well. I wish that I could make him my actual doctor but he only sees high risk pregnancies. He did tell me that if I decided to try again there were options to help and to make an appoint, which I most definitely would.

We went to the hospital, I don't think I ever stopped crying. As soon as they placed the lamineria I felt as if I was making a mistake. Even though intellectually I knew it was the right thing to do, emotionally I still have not been able to convince myself it was the right thing to do.  They told me at the hospital that I would be able to be sedated and not have to remember it. They felt it was going to be a very long process. They placed the cytotek at 3 pm and by 8:30  they still hadn't gotten my medication and I felt the need to push. So not only did I not get pain mediction, I had to remember every horrible moment. I couldn't stop crying. I didn't want to see her because I knew it would tear my heart out. Maybe that wasn't the best choice. Once she was out it took another hour to deliver the placenta. On January 11, 2011 at 8:55 my little girl was born at 4 oz and 7 1/2 inches long.

I was glad to find this site and see that there were other people who had been through the same experience. It gives me hope that maybe someday I won't feel this intense pain and feel as if I killed my baby girl. The hospital gave us a care package that had the blanket she was in, a tape measure with her length, her foot prints, and pictures of her. I guess in the end I am glad to have been induced because I did receive those and had I gotten the D&E I would not have. I don't know that I can ever forgive myself for terminating even though I know the likelihood of her surviving was not good. I also know that it would have been extremely difficult to have two special needs children. My daughter has to have therapy 4 days a week. I couldn't imagine having to take two. I know too that it would not be fair for my son to have two siblings that have special needs.

However, I can't help but think that I was to blame for creating her, not her; who am I to decide she gets to live or not? Maybe someday I will be able to forgive myself but now is not that time. Hopefully this will soon pass. I am not sure what will happen in the future but I know I don't want to ever go through this experience again. The most horrible part is when my 4 year old keeps asking me. " Mommy, why are you crying?" then he tells that he will cry too if I cry.


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