Monday, January 08, 2007

Matthew - Part One

Originally posted July 14, 2006, and deleted, and rewritten, and now reposted.

My second pregnancy happened in 1998. This time I was going to have the perfect midwife birth, yeah, right....because all you need to have the perfect birth experience is a midwife. God I was so naive.

I had severe nausea and vomiting and some days could barely work. I remember lying on the bathroom floor with my face on the tile, praying for someone, anyone, to rescue me from this fresh new hell I was trapped in. I had a little nausea the first time around, and a strange aversion to certain scents and foods, but nothing like this nightmare. A whole lot of anti-nausea medication later, I could function. Diclectin is wonderful, and truly really a blessing. Motherisk reassured me it was safe, one of the most studied drugs in pregnancy, ever. (Incidentally, a wonderful resource for anyone from anywhere around the world, who wants to get some advice on drugs and pregnancy. Click, phone, email, they are the best of the best, anywhere.)

I didn't want an ultrasound, but the midwife was so worried she sent me to the hospital clinic at 18 weeks. And then the bad news began.

Our baby had hydrocephalus, which had crushed his developing brain, he had major problems with his digestive system, and he couldn't move very well. They kept referring to his poor posture. In my head I'm thinking, "He's not supposed to sit up straight, he's a baby. WTF is wrong with these Doctors?" I learned later "posture" refers to the general look a baby has in utero, movement, position, etc. The radiologist told us right there and then what she saw, but we didn't get the full scoop until we saw the entire high-risk team the next day.

Our baby had full Trisomy 18, Edwards Syndrome, a fatal chromosomal disorder. We could have a bunch of other tests to confirm but they were very sure, since his hands and feet had a typical sign, with the forefingers and baby fingers tucked under the rest of the hand. Stupid me, I asked, "Why don't you just fix his fingers?" Answer, "Because he has no brain. Fixing his fingers won't help."

"Oh"

But we wanted to be sure, so we had an amniocentesis, and a stack of blood tests, and a color doppler ultrasound of his heart. That showed more bad news, he had a major heart malformation. The placenta we shared was also very damaged, and after that test, the doctors made it clear that I couldn't be further than 15 minutes away from a level 3 NICU and a major OB hospital for the rest of the pregnancy. I didn't understand until later that this was because I could have died from bleeding after a placental abruption.

The amnio results 10 days later confirmed Trisomy 18 and that he was a boy. We named him Matthew. He was terminally ill, and it was made very clear to us that while the hospital would support whatever choice we made, the end result would always be the same. So we made the decision to terminate the pregnancy, or rather I did.

No matter what my husband thinks, really in this a woman is always alone. It was my signature on the consent form, and my body. I had another living child, and this baby was fatally ill. If he could've been saved, I swear I would've hung upside down by my ankles on bed rest and flown in the best surgeons on earth. But it wouldn't have made any difference. Termination at 21 weeks, or birth at 40 weeks, or after many futile operations in a NICU is still a dead child when Trisomy 18 with complications is the diagnosis.

There is a website here, that describes in very blunt "take no sides" scientific terms what chromosomal abnormalities are, and the odds of survival and complications of each variant from full to mosaic. I wish everyone who "thinks they know what they would do", could read this site, and discover why women terminate pregnancies after trying so hard to have the baby. I have a feeling they won't, since it is so much easier for them to assume, to hold onto their prejudices, than to learn the truth.

The truth is that every pregnancy with a diagnosis of a birth defect, small or large, is risky. Placentas and fetuses develop from the same cells, and a baby with a defect, means a placenta with a defect. Some problems are surmountable, some are not, and that is why the only person qualified to make the decision is the person taking the risk, the mother.

I wasn't going to take the risk of bleeding to death, and put my son through the futile torture of continuing the pregnancy, just to hold a funeral later.

Some decisions we make are done out of love and kindness, no matter what the world thinks.

13 comments:

  1. Thank you for the link on the Trisomies. I'll certainly be pouring over the info there.

    No, I would never, could never, make a decision like you did until I was there myself. No one should have to, but when they do, we know it's got to be more than heart-breaking.

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  2. Like DD said, none of us could really know what we would do unless we were there having to make that choice, but I would like to think I would make the same decision that you made. a brave choice. Hard but right. Thankyou for sharing Matthew's birth story. Much love and Strength to you.

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  3. You are incredibly brave and strong woman who ultimately had to make one of the most painful choices possible. You are a wise woman and I am blessed to be able to read your writing and your story.

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  4. Thank you for sharing this. I know how hard that choice was for you, even though it sure as hell isn't much of a choice with Trisomy 18. Thank you for sharing the links with other people. Matthew was very lucky to be blessed with you for a mom.

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  5. True, none of us could ever say what we think we'd do faced with that heartbreaking decision- but I want to thank you for this post, and tell you what a lucky boy your Matthew is.

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  6. Thank you for this post. I know it is a hard one to write. As you know I to had to make a decision like yours. And it boils my blood when women say "I would never terminate no matter what". When faced with a child that is going to die no mater what or one so sick that they would have no quality of live you have to think of them. People have bashed for me my decision but I did it for my daughter. I miss her everyday and wish I could have changed things. Like you I would have done anything for her to be ok. Thank you for sharing about Mattthew.

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  7. Thank you for posting these. I left you a long comment yesterday on your previous post, but frickin blogger gobbled it up. So, I'll just say, again, thank you for both of these posts.

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  8. Wonderful post Aurelia. Really brave of you to write it. Wishing you all the strength and good fortune for another healthy baby, soon :) X

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  9. Wonderful post Aurelia. Really brave of you to write it. Wishing you all the strengh and good fortune for another healthy baby, soon :) X

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  10. This had to be the hardest thing you've ever had to write. I'm so sorry.

    I think the sentence that struck me the most was about how a woman is always alone in this. It really stopped my breath.

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  11. Oh, Aurelia. How incredibly strong you are to post this. And how incredibly strong you were to make the decision to put an end to your son's suffering.


    Much affection, friend.

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  12. Aurelia I knew with 100% certainty that I would terminate a pregnancy with a T18 baby.
    I would never put the baby, myself or my other chid through that.
    I am so sorry you had to go through this.

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