Monday, June 26, 2006

We have an initial diagnosis.

This is the news from today:

I got a call late this afternoon from the genetics counselor. God bless that woman, she said she was refreshing the lab reports all afternoon to see if ours was coming in..

The FISH results (early amniocentesis reports) show our Jacob has confirmed presence of Trisomy 18. When I asked about the spina bifida, she said that is one of the outcomes of Trisomy 18, and that that will be confirmed on the final amnio report, which we expect next Monday. The bad news is, Trisomy 18 is considered fatal in more than 99% of all cases, and it's worse in boys than girls.

The counselor also said Jacob's heart has "one of the most severe development problems" It's called hypoplastic left heart -- the left side of the heart is much less developed (including a missing valve), and the right side is overcompensating for it. She said he could theoretically make it to term, but that he would likely die soon after due to the fact that all four chambers must be working at birth in order for the baby to continue living. Right now, he gets his nutrients and oxygen from me, but later, when the heart has to do all the work, it would invariably fail in a matter of minutes or hours, regardless of whether he was born at 22 weeks or 40.

My Mom and sister have already said they'll come out if we decide to induce and end the pregnancy due to medical reasons. We have about a week to think about it (we want to see the final amnio results), then due to the law and needing to get "permission" (God, I hate that word, how dare they), from the hospital and hospital staff that would attend us before proceeding, we would need to move ahead fairly soon after the amnio report comes in. At the earliest, we would proceed late next week.

In the meantime, we have a week to do some serious soul-searching about what to do. We're meeting with the pastor of our church tomorrow afternoon as well, and our church has an on-staff clinical psychologist and former minister who can help us both. They are very supportive of us and will just help us through whichever decision we make -- whether to end the pregnancy now, or let it end on its own. There's a part of me that believes there's a special ring of hell being parents who have to decide whether to give up on a child who was so very much wanted, but whose situation is so hopeless.

Please continue to pray for us during this difficult time. Thanks for all the well wishes and prayers.

7 comments:

Vida said...

I'm so sorry.
Glad to know that you will have family with you during this time, and that you are consulting with your pastor and a counselor.

HUGS and PRAYERS...
V

MissHelen said...

Sending many good thoughts and hugs your way...

-Helen

Shana said...

I am so very, very sorry.

Ryan & Mez said...

We don't know you but we will pray for a miracle for your Jacob.

May God give you strength during this time and guide you to do what is right.

Jessica said...

I have been keeping up with reading your blog as we have the same due date. I am SO extremely sorry for what you are going through. I will be keeping you, Jacob and your family in my prayers...

Lisa said...

What can I say? I am truly sorry. I know you will do the best for your baby and family. I will be reallt hinking of you during this impossibly difficult time.

the SmockLady said...

I came over via Babes in Blogland. I am so sorry. I have no words of wisdom for you, but I wish I did. I have been praying for you ALL and I will continue to do so.

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