Mackenzie Mae’S Story

By Alison O'Connor

Mackenzie Maes Story is a real story of fallible human dreams turned to tragedy in this fictitious novel based on a true story. Many families, substantially the moms, have experienced the reality of a pregnancy, child birth, or the expectation of a healthy baby gone terribly awry. This book captured how it was lived from the initial knowledge, there were chromosome problems from the beginning, to the hope, writing and healing to the end. As a registered nurse, the author reflected on stories during a profession in the neonatal intensive care unit as she spent stretches of time at medical appointments with her supportive husband and their unborn daughter Mackenzie.

• Language: English
• Publisher: Xlibris US
• Release date: Nov 24, 2010
• ISBN: 9781456813512

Alison O'Connor

Alison O’Connor has lived in California all of her life being raised in Chowchilla, moved to the San Francisco Bay Area where she attended Dominican University of San Rafael and graduated with a Bachelors of Science in Nursing (BSN). Currently she lives in Petaluma with her husband, two daughters, puppy dog and a flock of chickens. This is her first novel.

Book preview

Copyright © 2010 by Alison O’Connor.

Library of Congress Control Number:       2010917865

ISBN:         Hardcover                               978-1-4568-1350-5

                   Softcover                                 978-1-4568-1349-9

                   Ebook                                      978-1-4568-1351-2

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

This is a work of fiction. Names, characters, places and incidents either are the product of the author’s imagination or are used fictitiously, and any resemblance to any actual persons, living or dead, events, or locales is entirely coincidental.

This book was printed in the United States of America.

To order additional copies of this book, contact:

Xlibris Corporation

1-888-795-4274

www.Xlibris.com

[e-mail]

89536

Contents

CHAPTER 1

CHAPTER 2

CHAPTER 3

CHAPTER 4

CHAPTER 5

CHAPTER 6

CHAPTER 7

CHAPTER 8

CHAPTER 9

CHAPTER 10

CHAPTER 11

CHAPTER 12

CHAPTER 13

CHAPTER 14

EPILOGUE

AUTHOR’S NOTE

89536-O'CO-layout-low.pdf

CHAPTER 1

Saturday June 26, 2010

(19 4/7 Weeks’ Gestation)

I walked out the front gate, crossed the driveway, and headed toward the mailbox. There was a huge rosebush with red roses growing in the flower bed through the overgrown ivy in between the two mailboxes. I cut the ivy back in the beginning of my pregnancy, maybe late February or early March. The neighbors benignly told me the rosebush was living there, out of view, to warn me before I found it the hard way (with rose thorns pierced through my skin) on my own. The warning was well regarded, as we moved into the house only ten months before.

It bloomed every year, peaking through the overgrown ivy, even though they no longer watered it. I did find the base of it green with thorns during my early spring pruning. And now it was in full bloom. I found a small red bud beginning to open, took the scissors out of my pocket, and snipped the stem long enough to put it in a small vase to sit in the kitchen windowsill. I went there for a deep, dark, blood, red rose; the ones in our yard were pale peach.

This is for you, Mackenzie. And hope for me that you are and will be okay, I whispered to her.

CHAPTER 2

Friday June 25, 2010

(19 3/7 Weeks’ Gestation)

I scheduled a sudden and unexpected appointment with Jane Absher, MS, a genetic counselor, in Alameda for Tuesday, June 29. I could not go in on Monday, the soonest appointment, because I was driving back from picking up my four-year-old daughter, Lulu, who was having a long-anticipated, preplanned summer vacation, a three-night sleepover with Grandma and Grandpa (G & G) at their home about three and a half hours’ drive away. Those are my parents. As soon as Lulu’s bare feet hit G & G’s paved, country driveway and we could hear the dogs welcoming us with their barks, she was ready to have her grandparents for herself.

You can leave now, Mommy, she said. Hug and kiss.

Slow down, Lulu, I said. Let Kora and I have a chance to visit with them too. You will get them all to yourself for the entire weekend.

Kora, my two-year-old daughter, stayed with me. Kora and her two-year-old disposition were welcomed for the grandparent sleepover, but I felt better keeping her with me. Jack, my husband (Lulu and Kora’s daddy), was doing a long spread of work, covering a trade, overtime and his own shifts as a firefighter/paramedic. That meant he was working, eating, and sleeping for a stretch of ninety-six hours on duty. I could reach him by phone when he had some downtime. I was looking forward to some one-on-one time with Kora.

Driving back to Petaluma from dropping Lulu off at my mom and dad’s in Chowchilla, I received a call on my cell phone from Jane Absher. I had talked to Jane before at a great length in the first trimester of my pregnancy, but the reason she called this time was something completely unrelated, with poles apart. With Kora sleeping in her car seat in the back and a full charge on my Bluetooth, I had time to talk. What she had to tell me changed my life and my family’s lives forever. I had no idea at the time of our conversation that the direction our unborn baby’s future was about to take.

Results came back from your genetic screening test you took on the twenty-second of this month, she said, starting right in.

That was strange, I thought. With my two previous pregnancies, I was never notified of genetic screening results. Usually no news is good news. Maybe policies and procedures were changing in the obstetrics department. Unfortunately, that was not the case.

The genetic screening blood test, also known as a quad marker screening, you took tested for increased incidents of trisomy 18, trisomy 21, neural tube defects, and anencephaly, Jane reminded me.

Yes, I remember I almost missed the cutoff to have the blood drawn. I was not too concerned about having this screening done, but I happened to be at the medical care center for the first detailed ultrasound of our baby and visited the lab while I was waiting, I replied. I had this test done for my previous pregnancies too. I might as well take care of this baby in the same way.

I distinctly remembered the day. It was circled on our calendar for weeks. This was the first appointment my husband was able to attend. We were excited and nervous to find out the sex of our third baby. It was too much to expect for Lulu and Kora to come to the previous obstetric (OB) appointments, so Jack stayed home with them. He did make all the prenatal appointments for Lulu and most of Kora’s, but this time I went to the early prenatal appointments solo. It was best for us and for our girls to have them stay home and play with Daddy than try to sit quietly in a waiting room.

Our daughters were not familiar with being left with just anyone either. Kora was comfortable staying with her grandparents, but Jack’s parents, the ones who lived closest to us were not able to help out on that day. And a babysitter was not what we wanted to do. We did not want the fury of a tantrum unleashed on our friends who also have kids the same age as ours. So this situation worked well for us for now.

You have to understand our little growing girl, Kora, to appreciate our decision. She has an independent, do it myself way about her. If she cannot reach something high up on a counter or shelf, she will get a stool, a kitchen chair, or anything to climb on to obtain the treasure. I have caught her many times pulling out drawers to use as steps to be higher. I encourage her curiosity and self-empowerment; however, my biggest agenda is her safety.

She truly does think she can do all things on her own, bringing frustration on the entire family when it turns out she in fact does need help. Kora do it! No, no, Mommy, all by myself! and Don’t help me! are common phrases we hear from her these days.

While brushing teeth one morning, we had a dilemma. Kora started the brushing on her own teeth. When she was done, I rinsed her toothbrush, put a small bead of toothpaste on it, and told Kora to open up. Usually she will put her hand on mine and we brush together. This morning, she was having an independent moment. No, Mommy. I brush! She said and then clamped her mouth tightly shut. It took much talking and coaxing (maybe I threatened?) to get her to open for a more thorough brushing.

She has also mastered pooping on the potty. Her next battle is wiping her own bottom. For this she says, Mommy, don’t clean me. This is one area I will not let her do on her own yet. We have had enough incidents with poop and Kora already. The most disgusting incident was when she was thirteen months old, cruising around in a towel without her diaper on, as she just got out of the shower. My attention was on helping Lulu shampoo her hair when Kora quietly pooped on the tile floor and proceeded to mash the feces with her feet, letting it ooze and squeeze between her toes like soft mud. She started stamping her foot, and I could hear the slurp, slurp, slurp sound of something wet, thick, and sticky. I looked up to see her activity of choice and instantly yelled my husband’s name, Jack! His first reaction was disgust, like mine, and then humor. Needless to say, she took a second shower.

We love her and her bull-headed determination. That will take her places (I keep telling myself). We practice much-needed patience with her knowing in time this will pass as she gets older.

She is just like you, Annie, my mom told me after I got done telling her the latest Kora story. Hearing this made me feel more comfortable having Kora stay with G & G. I had my doubts that other people have as much love and tolerance for her ways as we do.

The specific test that I am calling about concerns the protein levels in your blood for Down syndrome, trisomy 21, Jane said. Her voice quickly brought me back to the phone call. This is just a screening test. However, you are at an increased risk of carrying a baby that has Down syndrome. Her voice was so kind and gentle in my ear, but her words were harsh and cutting like a sharp knife to the heart.

The nurse in me kicked in, but the mom in me blocked some of the words I was trying to hear. How can this be? I am thirty-one years old. We decided to have our children at a somewhat young age to prevent problems such as these. Yes, there would be a two-and-a-half-year age span between this baby and Kora, but we wanted them close together in age. And we wanted to be young enough to be able to have healthy babies.

Did she say my baby has Down syndrome? No, this is a screening test. What does it test? Proteins—my proteins in my blood? How does that give enough information about the baby’s genetic makeup? What is the chance there was a mistake? All of this rambled through my head in lightening speed.

The chance that your baby has Down syndrome is one in 130. Normally someone in your age range has a chance of one in 800, Jane went on.

What does this mean? I heard her, but for some reason, my mind was not letting me understand. So this means 129 women will have normal healthy babies while one woman will have one with Down syndrome. Jane continued by practically reading my mind in what I was trying to make sense of. Thank you for spelling it out to me, I thought to myself.

There is nothing you did wrong. This has nothing to do with your health, diet, teratogens early in pregnancy or anything like that. This was already present in the blueprint of the egg or sperm before fertilization and conception, she said.

Yes, yes, I understand—chromosomes, genetics. I thought to myself as I was flipping back in my head about what I really did know about this subject.

Do you know anything about Down syndrome? she asked next.

I am a registered nurse. I am not currently working. I worked my last shift the beginning of November. I used to work in a neonatal intensive care unit, I told her. That will answer her question, letting her know that I had enough knowledge about genetic abnormalities to be scared out of my wits for our unborn baby’s growth and development.

I usually refrain from telling medical people I have a background in medicine with a current nursing license just for the sake of being treated like a patient and getting all the information any other patient would receive. In this case, I wanted to skip the small details of trisomy 21 and get to the heart of what we were dealing with. I have experience with sick babies already born, not prenatal care.

I know enough of the health care issues associated with Down syndrome internally such as congenital heart defects, gastrointestinal deformities needing surgical repair, mental retardation, and decreased muscle tone, as well as the external characteristics of a child with down syndrome: flattened back portion of the head, Mongoloid slant of the eyes, low-set ears, depressed nasal bridge, high-arched palate, and a large protruding tongue, I heard myself say. Why did I mention the facial features? I asked myself. That doesn’t even matter right now. Then I get lost in thought again.

Trying to get these kids to breastfeed is a challenge. Babies with Down syndrome push their large, protruding tongues up and out to try to suck and swallow milk, while a normal breastfeeding baby draws the nipple in the mouth and the tongue pulls the milk in a down and in motion. The obstacle for babies with an extra chromosome on twenty-one becomes very clear to successfully breast—or bottle-feed.

A very special baby I cared for in the neonatal intensive care unit (NICU) a few years back came into my mind and heart when I thought about Down syndrome. He was born to a married couple of Irish ancestry in their late thirties to early forties. He was their first baby. It was a complete surprise to find out soon after delivery that their baby boy had Down syndrome. Not only did he have a chromosome malformation but also congenital gastrointestinal problems not uncommon with the diagnosis of Down syndrome. He had what is called duodenal atresia.

The duodenum is the first section of the small intestine. Atresia is an abnormal congenital condition in which a normal opening or tube in the body is closed or absent. In a normally developed gastrointestinal tract of an infant, the stomach connects to the duodenum with a lumen (open space), so digesting food can pass through from the stomach, the small intestine, and into the large intestine. In this baby’s case, the first section of the small intestine grew with incomplete re-canalization of the lumen, leaving it completely obstructed. Nothing could go in and nothing could go out.

His gastrointestinal tract formed in a way that took me to