Monday, July 03, 2006

Decisions made

For more information on Trisomy 18 & other genetic disorders, please see the website: or

Brian and I went to see our little boy Jacob one more time on ultrasound. It has been 10 days that we got the initial diagnosis of spina bifida and possibly Trisomy 18.

It feels like forever.

We have decided to move forward with inducing labor to end the pregnancy due to medical reasons, given the extremely bleak outlook for our little guy and the confirmation of full Trisomy 18. The perinatologist said today he was "even less impressed" with Jacob's heart (he only has 3 chambers working and has hypoplastic left heart syndrome), plus all the other problems we've seen before. I saw his spot where the spina bifida is on his spine, and it looks a lot larger than it did before. Amazing.

He wouldn't really show us his face (he was face down against the back of my uterus, but we tried to get one picture. He did, however feel free to show us his rear end and his little pee-pee again. I told Brian "yep, that's our kid. Doesn't want to do anything but moon us."

Ten days ago he was measuring a little less than 2 weeks behind, now he is a full two weeks behind in his head circumference, but 3 weeks behind in his belly. He should be 21 weeks, 3 days today, and overall he's measuring closer to 18w5d or so. This is also a sign that his growth is slowing and that he is unlikely to make it to term even if we did wait.

We plan on going in this week to induce labor. My sister Jill & Mom are coming to be with us and help us through this. Initially I was very afraid of doing labor & delivery, but as time goes on, I find I'm less scared of that, and just want the opportunity to give him a birth, and for us to hold him and tell him we love him, and get a chance to say goodbye.

Today when I told our perinatologist how we've struggled with whether to end the pregnancy, but felt that we needed to, I was so glad when he finally said "I think it's the humane thing to do." I don't think that inner struggle will ever go away completely, but we hope to be at peace with it someday.

This is a deeply personal and difficult decision, one where there is no right answer because there is nothing easy about waiting for your child to die in the next few weeks or months and waiting for that -- or going through it sooner with the chance to say good-bye in person with a few minutes of life in your arms. Both choices end with a great tragedy, and all we can do is try to get through it now.

Thanks everyone for your love, support and prayers.


Katherine said...

I'm praying for you and Brian.

Cal said...

Sending all three of you hugs. You're in our thoughts.

Love, Cal and Jer

Vida said...

Love and prayers...

Jessica said...

Saying prayers for you, Jacob and your husband. I am so sorry for all the decisions you have to make...but I believe God is pushing you in the direction to the right decision. God bless you!

Anonymous said...

You are a wonderful mother whose son has given her the gift of a Mothers love. I truely believe your dream was a sign from Jacob.

He loves you and accepts that you and Brian are doing the best thing for all of you.

My thoughts are with you. I wish you all well during this traumatic time. Thank you for sharing your deeply personal story. It will help others who feel that they are the only ones.

With much kindness xx


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