Our Painful Decision

by Laurie Miller

Emails please to laurie.ken@sympatico.ca

Update:
Date: Mon, 22 Mar 1999

Date: Thu, 18 Mar 1999

I, on March 9, 1999, had my 18 week ultrasound. We were taken into a room (this is at a very large university hospital (tops in their field), and told the news that the ultrasound did not look good. Our baby was diagnosed with mild isolated ventricular megaly (hydrocephalus). The doctors told us this was not good to see 12mm in such early gestation. They talked to us about ending the pregnancy. This babe did not have a good chance of a normal life. They asked us to come back in one week to check the ventricles again. We were feeling very positive that our little miracle baby was going to pull through somehow. (Most of the pregnancy was filled with worry of one sort or another, weeks off and on of bedrest, etc.) Anyways we went back on Tuesday, March 16 and the ventricles had so rapidly increased in size in one week that they pushed the brain out to the absolute perimeter of the skull. It appeared as a thin line around one part of the skull. She (Daisy) has also a two vessel umbilical cord and possible fluid building up around the heart. Her outcome is grim. They told us we would have a better chance of winning a lottery than having any hope of her living an even half way normal life. They say she will, with 99.99% certainty will not walk, talk, and have control over her bowels and bladder. She will probably be blind and may not live too long after birth if she made it to term.

I have talked my brains out for the last two days to social workers, perinatologists, genetic doctors, genetic counselors, our minister and bereavement support workers. I am still going crazy inside. I am so scared to go through with interrupting our pregnancy on Wednesday. I feel as though I will never recover. I feel I will start to scream and kick when they come at me with the needles and other things used for this procedure.

I always thought I was against abortion for most reasons, I cannot believe that this is happening to me. I am so absolutely scared and terrorized. I through up the first night of being told, I have had a big lump in my chest that will not go away, and I have trouble breathing. When the house is empty I scream and moan and cry from the deepest part of my stomach. I am 40 years old and I so desperately wanted this miracle baby. We had our last baby 3 1/2 years ago via invitro fertilization. I was not supposed to get pregnant on my own. My whole being adores this growth in my stomach and know I have to choose to do the right thing.

This morning I woke up (I actually maybe had about 3 hours of sleep last night since Tuesday). I said to my husband, crying, I can't (our apostrophe is broken) go through with this. I will never recover, I will go crazy. I came downstairs and sat down at the computer for a moment to see if I could find anything on the Internet that would help me out a bit more. All of a sudden I felt so damned selfish. I CANNOT GO THROUGH WITH THIS, ugh, I want to let this baby possibly be born into a world that will ridicule her, poke her with needles, put her through various tests, procedures and operations. Live in a world where she may not her mother, her father, not smile not do anything but be a vegetable. I am supposed to let her be born because some people might ridicule me or pass judgement about us because it isn't right to take a life. I sat in the living room chair all alone in the house and cried and moaned loudly I yelled at Daisy and said I was sorry. I told her about her mother and dad and what our names were. I told her about our crazy dog Ginger. I told her I had to protect her and that I loved her (just a minute I need to cry again). I feel that what we have to do is the most absolutely selfishless and loving thing we will ever be confronted with. Nobody that hasn't walked in our shoes will ever know what heartache, sadness and pain we are going through right now. It's a nightmare.

I did start a book with a section for Daisy's funeral, her birth, questions I need to ask the doctors and my journal. I also spoke to the funeral home today and talked about the little baby pink carnations, the baby's breath and the daisies I want. I wrote her obituary and found a poem I like. I feel low right now because I'm tired but it was a bit better day today than yesterday.

We are having one more ultrasound on Wednesday morning and talking to the pediatric neurosurgeon after that then I am scheduled to be admitted. I wanted to have one more ultrasound just to have it drilled into my head again that this terrible nightmare is reality. I think the doctors are appeasing me but I deserve it.

Please pray for my family. My husband Kenny, me Laurie and our daughter Jillian. Please pray for my sanity, my soul and my baby Daisy Evelyn.

Love Laurie

For short time I had
your body in my body:
I carried
your belly in my belly.

And now, though I have
your heart in my heart
and feel
your soul in my soul,

I will never again have
your hand in my hand.
I miss your life in my life

Update
Date: Mon, 22 Mar 1999

We were told on March 9, 1999 at our routine ultrasound (although a level 2 ultrasound) that our 19 week old fetus Daisy had hydrocephalus her measurement was 12 mm. The first and only option they gave us was abortion up to so many weeks in Canada and up to many more weeks in the U.S. We were devastated. Daisy was a miracle pregnancy. I wasn't supposed to get pregnant after our last IVF daughter born in July of 1995. Daisy was my gift from God I felt.

We had a bad first three months as I had some spotting and a bad brown discharge that the GP gave me a 50% chance of carrying this baby past three months. So I got through that with a lot of bed rest. I couldn't do stairs and I couldn't decorate the Christmas tree. After that I was faced with the agonizing decision that everybody I felt was forcing me into an amniocentesis - although I really didn't want one. I finally decided OK I will have the triple marker test and if that comes back really high I will then be pushed on to have the amnio. I am 40 years old. I test came back saying I had a 1/9 chance of having a downs baby - they said the chances were as high as if I was 49 years old.

I had the amnio. The acetylecholesterase came back initially high but then days after that I got normal test results. Everything was find. The evening I had the amnio I started to leak amniotic fluid and continued to do that at a notable amount for two days. Went for other ultrasound they felt fluid was still OK but back to bed rest. I slowly leaked for almost a week and a half. Level two ultrasound ordered at a very well known university hospital with top notch doctors, etc.

So anyways back to my story after finding out our Daisy had water on the brain. Doctors said abortion abortion abortion and that was it. We came back home and told our family doctor. She in turn called perinatologist at hospital. He came back with better news this time. He said if he was a betting man, he would be things would be OK. One week later after a week from hell, I went back in for my 11th ultrasound. The ultrasound tech took a couple of speedy measurements (we had asked for the best technician and I believe we got her) of Daisy's head and was done. I remember seeing that the whole inside of her head was black if not more fully. I did see one small white area sort of above where her right eye might be. The area appeared to be about a 3/4 inch thin white line. We learned later that was her brain being squished against her skull. When we got back up to the clinic after an agonizing 1/2 wait they didn't call us into the examining room they called us into the consult room. A nurse that I hated gave us the bad news again. She said Laurie it looks bad, it looks really bad. She rubbed my back said oh you got a hair cut your hair looks really nice. She in my opinion had no right to be telling us before the doctors. I hated her at that moment and I wanted to attack her. She walked out of the room and I asked my husband to go find someone to tell them that I didn't want her in the room with us again. We could see a lady looking at an ultrasound on the computer - I new it was mine. She held her head sideways in her hand and slowly shook her head in disbelief. Then they came in, first the perinatologist, then the genetic physician, then the nurse, then the genetic counselor and then the social worker. We asked the nurse to leave. The genetic doc spoke first. She said in one week Daisy's ventricomegaly had gone from 12mm to 19.6mm. It was catastrophic basically. They held out no hope. They talked about abortion and autopsies. Those were our options. Lovely. They also spent a lot of time on her heart. The genetic physician told us after that her heart they felt was starting to develop fluid around it and this could be a sign she was starting to get tired. They said we would have a better chance at winning a lottery than having a half ways normal life. She probably wouldn't walk, talk, speak, see and she would be incontinent.

I have two more days to decide what to do. My brain says the logical thing to do is to terminate her life. I don't care how this sounds its the truth - there are a lot of nice words like interfering, interrupting, termination but the truth of the matter is I have to make the decision to whether or not to kill my child. The child I so desperately wanted. The gift God gave me.

I through up the first night, I didn't sleep, I was phoning the labor and delivery nurses all throughout the night because I needed someone to talk to. I have been shaking for almost a week now. I am sick to my stomach, I am unable to eat, and I can only drink juice and tea. I have had incredible support from people. Some people think I should let her go to term and die on her own. Doctors say she might make it to term, she may live minutes, hours, days, weeks, months or maybe till she's 2 or 3. I saw my nephew die at 2 1/2. He was hydrocephalic, cerebral palsy, blind, etc. He never cried when they put the big needs in. He actually didn't even wince. Mom signed a D.N.R. and took her 16 lb. child home and rocked him all night long until he died at around six that Sunday morning. She said his death was slow and very painful. We talked yesterday after eight years of no speaking (she was my husbands brothers wife and their marriage didn't survive it). She told me to make the decision now while the decision was still mine to make. She told me how painful it was to see her little boy bombarded with constant probing, poking, surgeries, pain and for what and she could do nothing. She talked about the affect on her then 3 year old daughter. She said let her die with peace.

We have talked to so many. Our minister or past two pastors. They are all so supportive. Our minister says it is the kindest thing to do. Our past pastor, a super dear person asked me last night he said Laurie, what is the most loving thing you can do? I knew instantly what my decision was. My head says yes, my heart says no. And my heart saying no then makes me feel selfish because I want to hold her, I need to smell her, I want to clean her little bum and show her off to my jealous friends. I, I, I, everything is I. WHAT ABOUT HER, MY DAISY, WHAT ABOUT HER. I am living in a dream world where I don't believe the doctors, I think they all somehow have a conspiracy to hurt us. I know it's not true but I still think it. I don't want to believe anything they say.

We also have a dear friend who begged the doctors when their daughter was 2 to let her die with dignity. They wouldn't. She is now 12 and lives in a wonderful home. We went to see the home two days ago as I saw the sugar coated version of hydrocephalus now I wanted to see our daughter's version of the condition. Alina melted my heart with her little pink helmet and the foamy slobber coming out of the sides of her mouth and they goofy grunting laugh. She was the second best child there. The others just were pvs (vegetables).

I have made her funeral arrangements. Daisies and babies breath for her flowers, twinkle twinkle and Jesus loves me for her music. We are getting the camcorder recharged and new batteries for the camera. I want flowers in my room when she's born and I want my husband to buy me a special candle I can burn when I'm with her and keep and burn on her birth and death date. Not sure how I will get through her due date. July 19, 1999. Not sure how I will get through life. Not sure of anything. Only sure I love my baby and my body does not want to relinquish her. My cervix does not want to open.

I still have two days to let God touch me and guide me.

Please everyone pray for my our souls.

Laurie