Cystic Hygroma

I realized in all my fear I never really posted about what a Cystic Hygroma is. It scares me to talk about it. Talking about it makes it more real. Not that I haven't talked about it, it still make me really real. Saying what it is is scary. I think that is what scares me. Looking at the stats of it all really scares me.

Cystic Hygromas happen in less than 1% off all pregnancies. Most of the time the result in miscarriage. Baby's lymphatic system isn't working properly and that is why the fluid builds up behind baby's neck. Sometimes the fluid is more than just behind the neck. Sometimes it goes down the entire spine. Sometimes it can go around baby's entire body. Sometimes they have things called Hydrops along with the Hygroma. Thankfully baby does not have Hydrops because that just complicates things more. There are also Septated Cystic Hygromas that are even more rare but I never heard the doctor say anything about it being Septated so I am not even looking at that part of it.

60% of all babies with Cystic Hygromas have a chromosomal abnormalities. Turners, Noonan, Penashokeir and Roberts syndromes, Trisomies 13, 18 and 21 are some of those abnormalities. Most of the babies who have these, die. A lot of miscarriages happen because baby had one of those. Many of these babies also have organ issues as well. A bad heart is the most common in these babies but that isn't the only thing that can be wrong. Sometimes it can be one organ other times it can be several organs.

If a baby with a Cystic Hygroma doesn't have chromosomal abnormalities but their Hygroma hasn't resolved by 20 weeks baby only has between a 2%-9% chance of a healthy survival.

Those numbers are so low and so scary.

If baby has abnormalities and the Hygroma hasn't resolved then basically it's a death sentence.

At what point do you decide what is best for you and your child. I would be lying if I didn't explore ALL the options if our baby. I would be lying if I said that terminating the pregnancy wasn't something we talked about IF things were bad. It's nothing something I am proud of. I am pro choice so that decision wouldn't go against my beliefs, but it wouldn't make that decision any less painful. As the baby gets bigger the risks just increase.

I have to not only think about myself but the baby too. What kind of life would baby live if he had some horrid abnormality. A lot babies, if they survive birth, live for just a few days at best. I know there are a lot of parents out there that give birth to those babies and they love them for the few days they are alive. I don't know if that is something I could do. I don't think that is something I would want to do. I love my baby, but I am basically setting it up for failure.

Then I have to think about my family. The kids. Kyle. Would it be fair to them to grieve for the rest of my pregnancy, give birth to a child who won't survive only to have to bury this baby a few days later? I personally don't think it's fair. I don't think Karie could handle it honestly. She is so in love with this baby already. She would be devastated. It would break her. She will be 6 in 2 days and that is too little to even grasp this very adult thing. When Emily miscarried she was very upset about the whole thing. I can't even imagine how rough it would be if she actually got to hold this baby and then have it die.

Obviously that isn't our first choice. Obviously we haven't made any decisions because we don't know anything. It's just an option. I mean, I haven't even talked to Kyle yet. I don't even know what he thinks so I really can't say WE on any of this.

This is just my feelings on the entire thing.

I have only talked to Emily about it. I know she won't judge me. She knows I need someone to talk to talk. It doesn't matter if she agrees with me or not she is there for me. In situation like this you figure out who your true friends are. She is one. I guess I really haven't given many people the chance. I don't want to talk about it. I don't want the world to know.

I am scared of what people would think of me if they knew how I felt. Can you imagine?! It's not like terminating a pregnancy after the first trimester is talked about that much. When it is talked about you would think those women are monsters. HORRID EVIL BABY HATING MONSTERS! That isn't me. I love my baby. I want it. I don't want to lose it. However, people are awful. People are so just mean. I don't understand. So few people have been in this situation. As far as I know, I don't know anyone who has ever been in this situation. I've been apart of pregnancy and parenting groups since I was pregnant with Kegan and I never heard anyone talking about this before.

It's scary. I feel so alone. So very very alone. It's scary. Urgh. I just can't understand my life right now.

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