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Product Details
| ISBN-13: | 9781742194158 |
|---|---|
| Publisher: | Spinifex Press |
| Publication date: | 05/28/2006 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 400 |
| File size: | 3 MB |
About the Author
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Defiant Birth
Women Who Resist Medical Eugenics
By Melinda Tankard Reist
Spinifex Press
Copyright © 2006 Melinda Tankard ReistAll rights reserved.
ISBN: 978-1-876756-59-8
CHAPTER 1
THE STORY OF LAYIAH: MY WONDER CHILD
d.a.marullo
The party is over. Everyone has left and Layiah and her siblings are sound asleep. It was quite a rambunctious birthday party. Hard to believe she is 2 years old. It really went fast. I decided to sit down and write about the birth of my wonder child. So here's the whole story about how she almost didn't even come to be.
* * *
It was a warm breezy June night here in Southern California. We decided to go to dinner to celebrate our shared birthdays and the signing of our divorce papers that afternoon. I picked a quaint Italian restaurant in Santa Monica right on the pier. We had a sumptuous dinner of calamari and eggplant parmigiana and a complementary glass of chablis for dessert along with the New York cheesecake. We took a walk along the pier afterwards and decided to have one last fling together for old time's sake
Exactly one month later I went to the doctor for my regular diabetes checkup. My blood sugar was a little high, my blood pressure was good – and I was pregnant. What? The doctor was crazy. No way could I possibly be pregnant! I didn't even date yet! Then it dawned on me – the whole birthday dinner and the last fling with my ex. I quickly left the office and made another appointment with a different doctor. Same results. After the third doctor and a very frantic feeling deep inside, I had to give in to the fact that I was indeed pregnant from that one last fling.
I told no one. I expected to miscarry as I had in the past, anyway. After eight weeks of still being pregnant, I saw a few specialists, all mandatory due to my age at the time: 44.
First there was the ultrasound that revealed that I was about seven to eight weeks pregnant. I even saw the little shadow on the film. It was bizarre. Deep inside I wanted it to be all a big mistake – you know – a tumor that they could remove and all would be well again. Then I was directed to the genetic counsellor, who basically sat me down and told me every possible terrible thing that could occur with this pregnancy, for 40 minutes straight. She advised terminating the pregnancy due to my 'point scale' (used to determine just how severe the problems could be with the pregnancy, taking into account age, family history and tests). She was advising termination of a life by a point scale! I wondered where I stood on that point scale, having so many things wrong with me and all; maybe it would be advisable to terminate me!
I then went back to have another ultrasound, this time by an expert in the field of difficult pregnancies. I wondered how they could label my pregnancy 'difficult' when nothing conclusive was proven yet! Anyway, I shuffled into this office only to find a young Latina girl crying and sobbing into a tissue. I asked her, in my terrible Spanish/English if there was anything that I could do, when she looked up and told me the doctor had advised she end her pregnancy due to the ultrasound that suggested her baby had a tubal defect. I wanted to tell her that that is not positive proof and that she needs way more tests, but I was already called into the examining room. As I lay there in the dark, technician and doctor attentively watching the screen before them, I wondered about that young girl and why anyone would suggest termination without having much of anything but an ultrasound to go by.
I was told to get dressed; I left that room to be ushered into a smaller room. The doctor came in and very matter-of-factly told me that my age and the possibility of defects were large enough warning signs that I should terminate. I objected to his reasoning and said that he was too quick to make such a vital decision.
He asked if I was having an amniocentesis test and I answered no. He said I should and then they could be sure of what he was sure of already and then I could terminate. I was appalled by this cold, horrible man standing before me. Did he not realise he was discussing a life inside me?
When I told him I had no intention of aborting, terminating or ending this pregnancy, I was surprised at my own voice and my strong conviction. He said that I would be sorry about the decision and that I only had a few weeks left to rethink it. I left so quickly that I forgot the book I'd brought to read. I cried all the way home and needed herbal tea and a warm bath to calm my frazzled nerves.
The next day I went to see my regular doctor whom I hadn't seen yet. He was my general practitioner and I'd known him for eighteen years. I told him the news and he tightened up his face and looked at his paperwork while speaking.
'Well, you're going to terminate, right? I mean it would be the smart thing to do!' I was so devastated by his words I almost started crying.
'I haven't really decided anything,' I said. 'Why are you so against this pregnancy?' I asked him in a childlike way with such innocence in my voice I surprised myself.
'Well, the numbers add up, after all – your age and all. It's probably not going to be normal!' He kept looking at his papers. I wanted to hit him, to scream, to run. All I knew was this was all wrong. They were all wrong. I felt so protective of this little life inside that I was shocked and comforted by it at the same time.
A few days passed and I spoke to my closest relative back east on the phone. When I told her the surprising news she asked me what I planned to do. I told her I wanted to go through with the pregnancy. She hesitated at first and added, 'Haven't the experts been telling you what may happen? Aren't they advising that you terminate?' I told her what they said and she agreed with them all. 'Don't do this, please. Think about it again.'
Now I was sure this whole world was crazy and as unfeeling as a group of Nazis. There was nobody on my side; nobody who could see things my way. Maybe nothing would be wrong and this child would be fine in every way. There was still a chance all would go well and I would have a beautiful happy child that they all wanted to kill! I cried for what felt like days, holed up in my room, ignoring my two other children, both completely fine and perfect in every way.
Time seemed to go by quickly. I was beginning to show, my belly finally getting bigger, but nothing like my other pregnancies. I was now three-and-a-half months along; with my other children, I would have been as big as a horse by now. I was still wearing my regular clothes but feeling quite sickly on a daily basis, which reminded me that I was indeed with child. It was the first week of September and this was the time of most of my family's birthdays, so I was not thinking too much about the pregnancy, when the phone call came. I remember the nurse's voice and the words 'abnormal' and 'unusually low', but the rest is a blur. It was the call I dreaded and it was upon me. I asked her to please repeat herself and that's when she clearly stated, like she was reading a shopping list: 'Didn't they tell you that your test for the protein levels were really low, so your baby is most likely Downs?' I almost fell off the couch. I remember the phone dropping to the floor and her voice trailing off to a 'Hello? Hello?' and then she hung up and there was only my pain and the dial tone.
I have never in my lifetime felt such deep-seated grief. Not even when I miscarried a boy child at ten weeks, years earlier. Not even when my grandmother died after a very long and painful illness, did I feel this. I honestly felt like my guts were being ripped out from the inside. I started crying, heaving, sobbing so hard that my sides began to hurt. What a terrible thing to tell someone over the phone and in such a cold and detached way.
I cried uncontrollably for about 30 minutes and then my mind quickly went into 'nurse mode': must get information at once. Being a nurse for twenty-something years is hard to turn off and I was very thankful for all my expert training that made it possible for my mind to switch from devastation to information. I quickly ran to the bathroom, redid my makeup which was streaked black all over my face, and fixed my hair. I grabbed the car keys and raced to the local library which was two miles away. I grabbed every book I could find on Down syndrome, especially the ones that weren't over ten years old. I had no computer at home at this time, so I decided that books were the answer. Besides, you can really devour a book and you can't do that as well with an internet article. Books have always been a comfort to me. When I found out twenty-nine years ago that I had a debilitating disease called Crohn's, I stayed in my room and read eighteen books cover to cover about the disease. It comforted me to have knowledge of the subject before me. So, that's exactly what I did with this bit of disturbing information. I read and read about Down syndrome so that I was fully informed about every aspect of this new fact of my existence. I was so involved in gaining knowledge that I had little time for any more pity for myself. Actually, that was the last time I shed any tears about the baby until she was born. I knew in my heart that the chance of her having Down syndrome was very high, yet I chose to cling desperately to the small fraction of a chance that she might still be 'normal'. I guess it was my way of coping.
My biggest fear was the possibility that I wouldn't carry to term. Miscarriage was still a frightening reality for me. I started feeling movement and refused to get excited. I kept telling myself not to expect a birth and then I wouldn't be overly disappointed if I did miscarry. I still hadn't told anyone except my relative back east and my ex-husband. He was shocked, disturbed and somewhat aloof about the whole scenario. I mentioned that there could be a problem but he really didn't want to hear that. We agreed not to tell the kids in case I lost the baby.
After what felt like weeks but was in reality months, I had endured my grandfather's death, my oldest son's arrest and my youngest son's severe allergies. Christmas was upon us and I chose the family Christmas dinner to announce my pregnancy. Forks dropped to the fine china as quickly as the faces dropped and everyone was silent for a few minutes, which was a miracle in itself for my family. Finally my mother spoke. As she chose her words very carefully, she was trying hard not to look at me. 'I hope all goes well with this baby – thanks for telling us.' My two older children were not as gracious. My oldest son, who was home from his one-week stint in a county jail for driving under the influence, simply stated, 'Why? What were you thinking?' and shook his head as he shovelled another forkful of turkey to his mouth. My oldest daughter, a mother herself to two children, shook her head and said, 'Well, we are going to run out of room at the family table soon.' The emotion was so barren that I felt like I was dining with strangers. I went home and cuddled with my two youngest children as my 6-year-old son said to me, 'Momma, I love the baby and can't wait for her to come here, no matter what she's like.' I was so very thankful that one person on this planet was encouraging to me, and it happened to be my youngest child. I kissed his precious head and fell asleep holding him as he fell asleep holding me.
My legs started to swell, as well as my hands. It was January now, a new year and closer to the official 1 March 2003, due date. My calculations were different. I believed my due date was 12 March. After all, I knew exactly when I had conceived the child. Movement of the baby slowed down a lot and I was very concerned. I was now on total bed rest and the worst was about to begin. My blood pressure kept going off the scale. On 13 February, I was rushed to hospital for probable pre-eclampsia, which can be fatal to mother and child. I stayed in the hospital all day and night. Early the next morning I left for home, with the promise to return the following day when they would begin inducing my labor. Upon leaving the hospital I went directly to our local drugstore and bought Valentine's Day gifts and cards for everyone, including all my children, and a cute stuffed pink bear wearing a stitched heart for my baby. I gave out all the gifts in case I didn't make it through. For the first time I was thinking that maybe I wouldn't survive the whole ordeal.
I went back to the hospital the next day, bags packed for me and a few things for the baby to come home with. I checked in and before long they started a oxytocin drip to induce my labor. My blood pressure was still high and my feet and wrists swollen. I watched the fetal monitor which was strapped to my belly and her heartbeat was nice and normal. As the contractions started, all that changed. Her heart rate dropped drastically with each contraction. I kept asking the nurse why this was happening. Finally they stopped the drip used to induce labor, and her heartbeat went back to normal. This went on all day Saturday and early Sunday. Finally by Sunday night the doctor on call for my obstetrician came in to tell me we were holding off on the inducement until my doctor came on duty in the morning. I slept restfully knowing all would finally be all right.
Early Monday, my doctor came into the room and said the contractions were adversely affecting the baby's heart so we could not go on with the labor. I thought he meant we would wait a few days and then see what happens. No – he made plans for an emergency c-section to be done in a few hours. I called my ex on the phone to tell him. He raced over after dropping the kids at my mum's and looked very grim and concerned. I was trying to stay optimistic. It was hard. I had ice chips and then they gave me some medicine to relax me. Before long they were shaving my stomach and prepping me for a spinal block.
At 2:13 pm on Monday, 17 February 2003, my baby, Layiah Vitina Wakan Cook, was born. I named her for all our mixed ethnicities: Layiah is Swahili, to honour her father's side of the family which is African American. It means 'born at night' – I felt after all she'd been through it was like being in the dark. Vitina, my Sicilian family name, means 'life' or 'little life'; my family has four generations of women with this name. Wakan is her Native American name which she shares with her older sister, again to honour her father's side who also have Cherokee nation in their blood. It is a name the Lakota nation gives to their spirit gods – it means 'courage' and 'strength'. I felt by honoring all the peoples that made up Layiah, they would surely protect her.
I barely got a chance to see her darling newborn face, as the nurses quickly suctioned, cleaned and whisked her away to the neonatal intensive care unit. I was frantic and wanted to know what was going on. All my ex kept doing was repeatedly questioning why they were saying she was probably Down syndrome. I had no time for him and all I cared about, as I lay on the table while they stitched me up, was what was happening with my child. Finally, after my loud protests, a nurse came by to tell me the baby was being taken to intensive care because she was under five pounds. Under five pounds! I was aghast! All my children were hefty eight-pound babies and never needed to be in an intensive care unit. I started to think the worst as they wheeled me into the recovery room. There I lay by myself, not feeling my legs due to the spinal block they gave me, wondering if I would ever get to hold my baby, the very baby that everyone told me not to have. This beautiful fragile little bird that nobody wanted me to bring into the world except a tender-hearted 6-year-old boy.
Tears began to stream down my face as I lay there wondering if they all were right. Maybe I never should have gone through with this. But the words of my grandfather kept ringing in my ears louder than my self-pity and my doubts. 'We come from strong people. Our people have survived much strife and pain. We have won all the wars that we fought and always came out victorious. We come from warriors, conquerors, conquistadors. We are always victorious. We are strong.' It sounded like a battle cry of the elders but for whatever reason, I suddenly had much faith in my bloodline. I felt as if my grandfather had sat down beside me to remind me of this. I think he was there. I felt stronger rather quickly and asked the nurse who came in to check me, if I could please see my child. She answered that they were taking measurements and doing tests with her and I would be able to see her soon.
It then dawned on me, she has made it! She has come through this whole pregnancy, she has been born into this world and she has breath in her lungs. She would be fine. I closed my eyes and knew that if she made it this far she was here to stay. A warrior. A survivor.
By 6 pm, I was wheeling myself in a wheelchair into the neonatal intensive care unit and saw my baby in an incubator with tubes and wires everywhere. I suppose most would have gasped at the sight, but I smiled, looking at my victorious one lying there like a little warrior. I got to hold her and smell her sweetness and feel her tenderness against me. I was tearing up with gratitude for this little one, for all her strength, all her courage. I felt very small holding one so big in spirit. Layiah Vitina Wakan was a fighter and I knew her life would be victorious. I knew this even when they told me she had two severe heart defects. I knew this when I was told she tested positive for trisomy 21 – Down syndrome. I knew this when she was undergoing open heart surgery and recovered in remarkable time. I knew this when I held her strong little hands in my fingers and looked into those determined eyes. And, I knew this today as I watched her turn 2.
(Continues...)
Excerpted from Defiant Birth by Melinda Tankard Reist. Copyright © 2006 Melinda Tankard Reist. Excerpted by permission of Spinifex Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Contents
Acknowledgements,Introduction,
The story of Layiah: My wonder child D.A. marullo,
All is right with my world Diana D. Aldrich,
It's about love Teresa Streckfuss,
Your baby will die: The story of Grace Sandi Seyferth,
Giving life a chance Nirmmala Jegathesan,
Finding joy in the weak among us Julia Anderson,
'The best experience of my life': HIV-positive women on pregnancy and birth in Australia Karalyn McDonald,
My children have compensated me tenfold Johanne Greally,
The 'standard of care' would be to abort my unborn child Heather Arnold,
Living in the shadow of Mönchberg Elizabeth R. Schiltz,
So glad I listened to my heart Stephanie Gillespie,
Gabriel was going to die, but first he was going to live Amy Kuebelbeck,
I wouldn't swap them for anything Leisa Whitaker,
This baby would be loved Alison Streeter,
The blessings far outweigh the sorrows Lise Poirier-Groulx,
Just crash through it Rosaleen Moriarty-Simmonds,
Go with your instincts Lisa Roche,
They told me my child would want a new mother Jo Litwinowicz,
The most beautiful face on earth Michelle Harmon,
Afterword,
Glossary,
Bibliography,
Index,