Friday, January 12, 2007

Matthew - Part Two

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

After we got the final definitive diagnosis, my husband and I tried to find information on Trisomy 18, but back then, the internet was pretty empty. Hard to believe, but I swear to God, Dr. Google didn't exist yet and Netscape couldn't come up with anything helpful at all. Most of what we found related to infants and children with hydrocephalus, or adults who had hydrocephalus and had gotten a shunt. They seemed fine, or at least a plan could be made to help them. There was nothing that could be done for in utero hydrocephalus. This is still true to this day, especially for a baby with a chromosome defect, because they can't survive the in utero surgery. In the future, who knows?

So I met with the specialist, and signed the papers.

I started at home, using Cytotec intravaginally. A big mistake, emotionally. Very easy, from a physical perspective. A few minor cramps and when we went to the hospital the next morning, I was already dilating. I wish the doctor had put the medication in though, it would relieve some of my transient guilt. Why guilt? I would love to be able to answer but I waver all over the place on this. It's incredibly hard to match your emotions and your intellect on these things.

At the hospital, I had a lovely room, filled with sunshine. Throughout this whole experience, the sun was shining, it was beautiful weather, which makes no sense. If my son was dying, shouldn't the whole world stop spinning, shouldn't the sky be filled with clouds and darkness?

My husband was by my side, with the camera at the ready and my dear friend S. to help. The Doctor broke my water, gave me some more Cytotec, and labour began in earnest. I had insisted on a walking epidural because labour at 21 weeks is still full labour, but most of the time epidurals are not standard for this kind of thing. Usually they hook you up to an I.V. pain pump and leave you to vomit and hallucinate from the morphine. I insisted on getting the same standard of care any women giving birth would, because I didn't want to be shoved away in a corner, as if my pain didn't matter, or as if something shameful was going on.

I actually made it through part of the labour without an epidural though. And because my back wasn't a mess this time, I was okay for a few hours, breathing through contractions. Sometimes I think that this part was a gift I was given, to make up for my unusual labour experience the first time around. Yes, I have tried to find gifts in this experience. Moments that were healing in some way. Very very hard to do.

Eventually I got the walking epidural. I gave birth about an hour later, no pushing required, he was too small to need it. He was tiny and perfect looking on the outside, unfortunately not so okay on the inside. If I hadn't seen the ultrasound closeups with the problems, I might not have believed it myself. We took dozens of pictures, and the nurse helped us make handprints and footprints in clay impressions. We baptized him, and after about 6 or 7 hours, I finally handed him over to the nurse, for weighing and measuring. Although he was 21 weeks in gestation, he weighed less than a pound, closer to a 19 weeker.

After they unhooked me from the IV and the epidural, I took some time to rest, and eventually I was discharged. I wanted to leave that night, because I knew that all the new moms and their live babies would be leaving in the morning. I couldn't stand the thought of seeing them. It was still a possibility that night, but two of my nurses, those wonderful blessed angels, went ahead of me, checking around every door and hallway to ensure I wouldn't see anyone I couldn't handle. They walked me right out to the door, making sure my husband had the car waiting.

A few days later, we held a funeral at our church, he was cremated and buried in a local cemetary near our house. We invited some family and friends and we all went out to a beautiful little restaurant nearby for some food, and to talk a little. Then we went home, without a baby, and tried to figure out what to tell our son about his little brother. At two, he couldn't understand what happened but he knew there had been a baby in mommy's tummy. And now, there wasn't.

Where was our midwife? Well, she disappeared soon after that first disastrous ultrasound. She told us she didn't know what to do because she "only takes care of normal babies."


I guess all that emotional support midwives are famous for wasn't in her repetoire. Since then, I've discovered titles (like nurse, dr., ob/gyn, midwife, priest) are irrelevant and the heart is what matters. We all have the ability to be kind to others. We can choose to be gentle to our fellow human beings, or not. Compassion is the mark of a real professional, not a degree.


  1. I just reread this again and it broke my heart. I'm so sorry you had to go through this.

  2. No words of comfort- my heart aches for you... x

  3. Dear Aurelia, I am so very sorry. What a terrible, traumatic, unfathomable thing to have to go through. I hope that you are healing.

    Your last paragraph was so true. The heart is what matters. And I thought it was so lovely of the nurses to escort you out and make sure you were not hurt further. It's compassionate gestures like this that restore my faith in the world.

  4. I'm sorry you went through such a hard, sad time having Matthew. I'm glad you have found so small gifts in this experience. My heart aches for you that you feel guilt about administering the Cytotec yourself. I hope you can let go of those feelings. You have been through so much, you don't need some guilt on top of that. I am sorry it turned out this way for you and for Matthew and his brother and Dad. Thankyou again Aurelia for sharing Matthew's life with us.

  5. Thank you so much for telling your story. It's sad but beautiful. And you said the part about the professional perfectly. Anyone can get a degree, I'm living proof, but compassion reveals a true soul. The compassion you give to others will come back to you ten-fold, I hope, as you deserve it.

  6. Crying. For you. For me. For every woman who has ever had to go through this.

  7. You have suffered so much as a mother and it's just huge. I am so sorry, these areas are so hard to talk about and much much harder to live with. Poor A. I am so very sorry.

  8. I can't believe that anyone would have suggested that you should insert the Cytotec, before going to the hospital. I just can't believe that someone would be that stupid.

    Is it me? Or, are people thinking less?

  9. Oh Thrice, sometimes I wonder if they ARE thinking less! You're right.
    I'm going to talk more about that on my next post, the medical side I guess, but also the doctors and the way they treat moms who go through losses. Eight years later and it's things like that that bother me. If only they asked women how we want to be treated first, life might be different, I guess.

  10. I'm so sorry about Matthew. I'm glad you reposted this to help tell his story. It's not a happy one, but not all worthwhile stories are.


  11. I'm so sorry. Thanks for being brave enough to share your story.

  12. Thank you for sharing your story, I am so sorry for your loss.

  13. Hi. I just happend upon your journal and started reading. I caught my breath when I read your entry. See we lost our baby Zachary at 15 weeks 2 days on 11/22/05. He had Trisomy 18 also. Like you I had No idea what it was and unfortunetly the Drs I was seeing at the time were and Still are incompentent(sp) and wouldn't give me any information on it. I just wanted to DeLurk

  14. Your comments about feeling guilty about the Cytotec ring familiar for me. When I was at the hospital losing my daughter, the doctor told me it was inevitable--it would happen sooner or later and the outcome would be the same, so did I want to hurry up and get it over with? Yes, at the time I did, so I gave permission to induce....and forevermore I wonder if maybe some miracle would have kept her inside me long enough for her to survive.

    I also relate to your feeling toward the labor as a gift. The labor I had with Hope was an amazing experience.

    I'm so sorry for your pain. Thank you for sharing Matthew with us.

  15. Thank you for sharing this. I'm so very sorry.

  16. I'm so sorry for you, your husband, your other child, and for Matthew.

    I went through something similar this past June (Trisomy 21 with severe hydrocephaly) and we terminated at 18.5 weeks (and I submitted a post about it to Stirrup Queens for Creme de la Creme, too). It was the most difficult decision of my life and was made (as you said in Part 1) out of love for my child, and my living family.

    Peace to you, and thank you for sharing this story.