Child Of My Heart: The Trisomy 13 Journey

By Lori Reite

This is the story about life with our two boys born who were born with trisomy 13,(Patau Syndrome) A syndrome so severe it is labeled "not compatible with life" and how the birth of one baby lead to the adoption of another.

• Language: English
• Publisher: WestBow Press
• Release date: Feb 28, 2024
• ISBN: 9798385018857

Lori Reite

Lori is the mother of a blended family, who home schooled, raised and co-parented nine children. Eight boys and one daughter. Two of which were severely disabled. A grandmother of nine and a passionate writer, friends and family encouraged her to put their story into writing. When she is not writing, she is tending to the animals around their small homestead, riding her horse, babysitting or working the harvest at a neighboring ranch. Her other hobbies include, baking, canning, crafting, building projects and at one time, welded for a living. With a heart for children, over the years she served in her church as a youth group leader, wrote and co-directed plays, helped with VBS and harvest festivals. Today, she lives with her husband in rural Nevada.

Book preview

Copyright © 2024 Lori Reite.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.

WestBow Press

A Division of Thomas Nelson & Zondervan

1663 Liberty Drive

Bloomington, IN 47403

www.westbowpress.com

844-714-3454

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Any people depicted in stock imagery provided by Getty Images are models,

and such images are being used for illustrative purposes only.

Certain stock imagery © Getty Images.

Holy Bible, New International Version®, NIV® Copyright ©1973, 1978, 1984, 2011 by Biblica, Inc.® Used by permission. All rights reserved worldwide.

Holy Bible, New Living Translation, copyright © 1996, 2004, 2015 by Tyndale House Foundation. Used by permission of Tyndale House Publishers, Inc., Carol Stream, Illinois 60188. All rights reserved.

Interior image credit: Interior image family silhouette forming a heart. Image by Gordon Johnson from Pixabay

ISBN: 979-8-3850-1884-0 (sc)

ISBN: 979-8-3850-1885-7 (e)

Library of Congress Control Number: 2024902915

WestBow Press rev. date: 02/24/2024

CONTENTS

Part 1: Tucker’s Story

Part 2: Joey’s Story

Part 3: Compatible With Life

PART 1

TUCKER’S STORY

46 + 1

001_a_lbj23.jpg

INTRODUCTION

1 50 years earlier on the banks of the south fork of the American River, the 1849 rush to northern California to find pay dirt and get rich took place. All along what is now the Hwy 49 corridor is called the Gold Country. 10 miles above where the first strike of gold was made by James Marshal in Coloma Ca., is the small mining town of Georgetown. A quaint mountain community that lies between the south and middle fork of the American rivers on top of what is called the Divide. Not the Great Divide, but a pretty great place to grow up and to raise my family. Our home sat on the outskirts of our town of 962 people, which might include the cemetery. The El Dorado National Forrest was the back yard to 6 young boys and their sister. There was never lack for anything to do. They were creative and built log cabins and tree forts and zip lined from the evergreen limbs. They flew over bicycle jumps and ventured out miles of logging roads on their quads. And yes, they even had a few mishaps that landed them in an ER. They explored the forest and propelled down ravines, investigated caves, had paint ball gun wars, fished, and played in the creek in the canyon below our house. They encountered wildlife. Not just any wildlife, but bears, coyotes, and mountain lions and occasionally, they would come home with a rattlesnake and spend the afternoon skinning it out. They hunted deer, squirrel, and quail. They could spend all day on horseback riding deep into the woods. Rain, snow, or shine. The same woods I grew up riding in. the same creek I grew up playing in.

Our children never had an Atari, which was the video game rage at the time, but they never lacked for anything to do. They were always looking for the next adventure. Boredom did not exist.

Our family on both sides also lived in our small town. Our children grew up with grandparents, aunts, uncles, and cousins only minutes away. Family gatherings were a common event which usually included friends and neighbors that had no family around. We gathered traditionally in the family home I grew up in for all the holidays.

Our community was very close Knit. Most people were related to half the town so you did not dare gossip about anyone. Everyone knew everyone so if you did something you should not have, someone would be calling your parents. The local deputies were everyone’s friend and as a child, one often made his coffee stop at our house. It was a great place to live and I hold many memories of it near and dear to my heart.

April 2001. Most of my children had grown and moved out. A fraction of my blended family remained…...

A NOISE IN THE DARK

Connie, Luke, dinner! As I called the kids in for this long-awaited meal, I thought over the last seven months, raising these two pigs to perfection. Admiring their flat backs and wide hams, knowing their time would soon be up. Anticipating that first bite.

It had been the week before when I woke up in the middle of the night that I heard a peculiar sound outside our bedroom window. The sound of water being poured, or splashed, I could not quite make it out. Just outside the window was a bath tub that we had incorporated into our front yard landscape. We had covered the outside of it with a granite spray paint and filled it with water and made a gold fish pond. My mind began to whirl as I imagined a racoon fishing for a late-night snack in his personal watering hole, scooping up a gold fish with his paws and washing it clean before devouring his golden meal. I decided to quietly slink out of bed and drop to my knees to peer out the narrow floor to ceiling length double pane glass window. The moon shielded by the clouds did not offer much light so I grabbed a flashlight. Shining its beam directly at the tub reflected nothing! What was it? Was I dreaming? Imagining it? I climbed back into bed. Laying fully awake now, wondering if one of the horses got loose and was out for a midnight stroll around the yard. No, of course not, I would have heard the clip, clop of its hooves as it made its way up to the trough. A mountain lion? A lion is light on its feet, very sneaky, always on the sly. I ruled out a lion. Just then, a loud slurping sound interrupted my thoughts. There it was again! A bear! It has got to be a bear! My heart raced as I thought of a bear only a few feet from my head. The pounding of my heart is I am sure what woke my husband up. I told him I thought a bear was outside our window. He grabbed the flashlight and quietly snuck out to the front porch ready to scare off a bear. And there in the beam of the flashlight stood 250lbs X’s two, of hams, chops, and bacon on cloven hooves! Bacon and Dinner, had escaped their pig pens. Wrangling pigs was not my idea of a late-night romp in the woods. And certainly, was not an easy task in daylight. Right then, we decided, Dinner and Bacon’s days, no I take that back, hours were numbered. In the morning we were calling the butcher!

The following weekend, we loaded up the kids and horses and trailered to a nearby popular riding spot. It was warm for the season. T-shirt weather. A beautiful day for a trail ride. I made sure and asked my doctor if I could still ride while pregnant. He said as long as I have been riding all along, which I had, and it was light riding, which it was, it was ok. All was good.

Monday came and we picked up the three sacks of cut and wrapped pork. We had talked all week about how good this pork was going to taste and the night was finally here. With the table set and the kids washed up, we all sat down to eat. Jim blessed the food and we dove in passing around each dish. Now I am usually the last one to get all my food on a plate so the others had begun to eat as I was still cutting up my pork chop. I was anticipating that first bite of our home-grown pork. I raised my fork and slid a bite size piece of chop into my mouth. Suddenly, I felt a warm wet sensation trickle down my legs. I jumped up and quickly walked to the bathroom. My puzzled family stared on, wondering what was wrong. Was it the porkchop? My husband thought. What was wrong was, I was 32 weeks pregnant. Barely showing, I had just bought my first pair of maternity pants on our way to go pig hunting in the Diablo Mountain Range two weeks before. This was too early for my water to break. A little alarmed about what was happening, I wondered if riding two days before had caused me to go into a premature labor. I tried to stay calm as my husband followed me in to the bathroom. This was my 5th pregnancy. I wasn’t new to the trimester stages and I knew it wasn’t time.

Almost one year before to the day that I became pregnant with this baby, I was pregnant with my 4th child. The first for this marriage. I was approaching 40 and knew my eggs were numbered. After having 3 normal healthy babies, I honestly did not think that one would be any different. We had just spent four days hunting on horseback in the Siskiyou Mountains. But at 12 weeks gestation, I started spotting. And when I went to the doctor, my first ultra sound ever with child, confirmed that my baby had passed at about 10 weeks gestation. My doctor gave me the choice to go home and see if I would deliver on my own. If not in so many days, I would have to go in for a DNC. Something I was not looking forward to. I went home and prayed for the Lord to activate my labor as I did not want to endure a DNC. He did not disappoint.

The next morning, I felt the faint but familiar aching in my lower back of labor. As time progressed, so did my labor pains. By mid afternoon I had the urgency to go empty my bladder. As I did, the tiniest, little baby had slipped from my body and into the bowl of the toilet. Frantically, I started fishing him out with my hands praying God would not allow him to go down into the drain pipe of the toilet were I could not reach him. God’s mercy was on us that day. I was able to retrieve this tiny body and place him on a 4x4 piece of gauze. To me he was perfect. I could count every finger and every toe. His male gender was very evident and I knew at 10 weeks gestation, this was no lump of tissue, but a human being. I called my husband who worked just around the corner and asked if he wanted to come home and see his son. Because the pregnancy was still so young, we had not even thought of names. We found a Mickey Mouse band-aid box and put this tiny precious baby in it and buried him in our yard. And from that day forward, we referred to our baby as Mickey.

Now, 32 weeks into my 5th pregnancy and my water broken, we loaded up the kids and drove over the windy canyon road in the dark to meet my doctor at our local hospital. As reality started to sink in, I mentally prepared myself for having a baby that night. I thought I would just have a smaller baby, smaller than all my other 6 pounders, and then we would come home. After all, a lot of babies are born in even earlier stages and grow up to be just fine.

When I was first pregnant, a dear friend from church who had had a lost a newborn, saw I was pregnant and instinctively laid her hands on my small round baby bump and began to pray for a healthy baby. God hears the prayers of the righteous. This woman beamed with the love of Jesus and I knew God heard her prayer. I was beginning to think everything was going to be ok.

At the hospital my doctor confirmed my water had broken but assured us there would be no baby tonight. Dr. Camden was concerned that if I delivered the baby too early, the local hospital we were at would not be able to handle a baby whose lungs would not be fully developed. He wanted the baby to bake a little longer and so prepared to admit me for observation. If my labor progressed, he would have to transfer me down to Sacramento to a hospital with a high-risk labor and delivery department and a neonatal intensive care unit. (NICU)

The Baby. It occurred to us we still had not decided on a name. We did not even know if we were having a boy or girl. I like surprises when it comes to giving birth, and had never known the gender of any of my babies until they entered the world.

A few weeks earlier, Jim and I were sitting in our truck in the middle of Main Street of our little rural mountain town. Most people do not park in the middle of their town’s Main Street. But for Georgetown, it was the norm. Georgetown was founded in 1849 and was considered the hub of a rich gold mining area. But in 1852, a disastrous fire swept through the mining town and the town burned to the ground. In the careful planning of the new reconstruction, the streets were laid out 100ft wide as to ensure the whole town would not burn down again. As the years passed, the town became a logging town. The loggers would come down the hill and to cool the brakes down in their logging trucks before heading over the canyon, they would stop in the middle of the wide main street because it was the only place they had room to park. Cars began to park there too, and eventually lines were painted on the road and a designated legal parking was born.

So, there we sat parked in our grey Chevy truck when a friend, Mike Tucker drove by.

There goes Tucker My husband says. Tucker, that’s a cool name. If we have a boy, we could name him Tucker!.

I was not as sold on the name as he was. I had more reasons to not name our child Tucker than I had reasons to. It just was not rolling smoothly off my tongue. I was not particularly concerned yet about not having a name for our baby we could agree on. After all, we had plenty of time. Or so I thought.

As Dr. Camden began to prepare for me to stay the night at the hospital, my family decided to head home for some much-needed sleep. I told them I would call if anything changed. They arrived home about midnight and were just climbing into bed when I called.

I’m being transferred to Sacramento l told Jim. My labor is progressing

HIGH RISK LABOR AND DELIVERY

April 4th, 2001, my labor was no longer being held back by the magnesium I had been given. For the last two nights, my labor had increased during the night to uncomfortable, but would subside during the day. A level II ultrasound was done to make sure our baby’s organs were developed. When the doctor came in, she did not seem too terribly concerned of the findings. She noted there was a slight increase of fluid on the baby’s brain but nothing to be alarmed about. She said sometimes a boy will have a little more than normal. And since I said I did not want to know the gender of our baby, she could not tell me if that was the reason or not. Other than that, she said everything looked fine. So, at 32 1/2 weeks gestation, the doctor was confident my baby’s lungs would be developed enough and it was time to stop the magnesium and let the baby come. By 2 AM the next morning, I was in active labor.

My other three deliveries had been all natural, no pain meds, inductions, or c-sections. My last pregnancy, besides the miscarriage, was also thirteen years earlier. The nurses had made several offers to give me an epidural but in my stubborn labor state, I refused. I’ve done this before, I got this I thought. Now 5cm dilated, I am trying to remember to focus and breath as I was taught in passed child birthing classes years before. We had yet to go to a class with this pregnancy so in my mind I was doing a crash course. My husband and daughter were all but begging me to get an epidural but I was in macho woman mode and was determined seeing this delivery through without any pain meds. Moving into the transition phase of labor, the time frame for getting an epidural was closing. My family made one more final attempt to get me to except having an epidural. My 13-year-old daughter reminded me I was 41 and told me to quit being so stubborn.

I’ll feel like a failure if I get an epidural I said.

You would be a fool NOT to! my husband and daughter said in unison. Coming from two people who never had to prove anything laying on a delivery table.

Just get the epidural! My husband finally said in frustration.

I am forty-one, I’ve already proved I can do this X’s 4, What am I thinking? I finally caved to the pressure building in the room as well as in my pelvis.

Ok, I’ll take the epidural!

It might be too late the nurse replied. The anesthesiologist is busy with other patients now and doesn’t know if he can get to you before you have your baby. The window was closing fast.

Just in the nick of time, the anesthesiologist breezed in and made quick work of injecting the anesthesia into the epidural space around my spinal cord with my next contraction. Instantly, I felt relief.

I went from obstinate, stressed, and on the verge of tears, to relaxed and happy. This epidural thing was a God send and I wondered why I had waited so long to get it. Even more, I wondered why I waited till my fifth labor and delivery! It was the first time I enjoyed watching my child be born and realized my stubbornness had robbed me of the joy of watching the births of my other children. I vowed if I ever found myself waddling through the doors of a labor and delivery room again, which I was pretty sure was never going to happen, the first words out of my mouth would be EPIDURAL!, and I would not stand in judgement of the women who also made that choice.

It’s a boy! the doctor exclaimed at my last push.

There’s Tucker! my excited husband said, as the doctor laid my purplish newborn on my chest. Suddenly the name Tucker Wesley Reite seemed right. But as I gazed down at him, guilt flooded over me as I thought, he’s not very cute. All my other newborns were picture perfect beautiful babies. But Tucker was grey, and looked like a little old man. Something was amiss. That thought had no more run through my mind when my baby was whisked away. Not being too alarmed, as the doctor had warned me that this was a normal procedure when a baby is born in the high-risk labor and delivery unit. It did not necessarily mean something was wrong. Jim and Connie followed the nurse out the door with our new bundle of joy. As I laid there post-delivery, the doctor held up my placenta and pointed to a tiny tear to the assisting nurse.

A two vessel-chord she said, holding up the next specimen, the results of the third stage of my laboring efforts.

Not realizing that a two-vessel umbilical cord was not normal, I was not alarmed at the statement either.

There is something wrong with this baby! My husband heard, as the words rang out in the hall. The attending Neonatologist was hovering over our newborn preemie of 4lbs, Simian crease in his hands. Rocker bottom feet. We are looking at a syndrome here!.

Connie and Jim watched on as the medical team began to resuscitate and stabilize our baby boy. Jim tried to snap a few pictures wondering if they were going to be the only pictures we would have of our son. But in return, the doctor snapped at him until the nurse graciously informed the doctor that he was the dad.

Is our baby ok? I asked Jim when he came back into the room. The look on his face told me otherwise.

What’s wrong with our baby? now concerned.

I don’t know, they are talking about a syndrome. He said, and preceded to tell me about the events in the hallway.

I was ready to jump off the delivery table to go see our son but the delivering doctor was not finished with me yet. And then I had to go to a post delivery room and wait. The wait seemed forever. Eventually I was sat in a wheelchair and taken to the Neonatal intensive care unit.

We rolled up to Tucker’s warming bed. His little body had pinked up and we stared at the wires and tubes that covered this tiny human being before us.

We’ve ordered some genetic testing The Neonatologist said. The same one who snapped at Jim in the hallway. Who later we had come to realize had no bedside manner.

We met with the Geneticist who did the testing.

I have examined your baby and I don’t see anything too terribly wrong with him she said. Maybe a learning disability or speech delay, but I’ve ruled out all the nasty trisomies.

Nasty trisomy’s I did not even know what that meant. But since she ruled them out, I was not worried.

I’m leaving on vacation she said. I’ll be gone a couple weeks. I really do not expect you to hear back from us

And that was the last we saw of her.

We made the hour and a half drive every day to spend time with our baby. We would spend hours there. It had occurred to us that in Tucker’s room of four or five other babies, all much smaller than him, that nobody had come to visit them. The nurse even confirmed our suspicion. It was heartbreaking to know these tiny babies laid here day after day without the loving arms of a parent to hold them, feed them and do whatever hands on care that was allowed. And because they weren’t our babies, we were not allowed too either.

One week later we got a call from the hospital. We were to meet with a Geneticist and a Social Worker the following day.

FATAL DIAGNOSES

What your baby has is VERY, VERY serious And there he was, Dr. Doom, The Neonatologist that lacked bedside manner.

Would you care to elaborate? My husband asked.

I can’t said Dr. Doom. You will have to wait for the geneticist And then he turned and walked away.

My husband and I both looked at each other in disbelief. We still had 20 minutes to wait until we met with the geneticist. As the minutes ticked by ever so slowly, we wondered what could possibly be wrong with our baby. How severe was severe? Was it a matter of perspective? We started naming off children we knew with different disabilities. Down Syndrome, CP, Autism, severally disabled unknown diagnoses. We agreed that if our child was to have any of those, we were o.k. with that.

I thought back to when I was sitting in the Obstetricians office around 12 weeks gestation. Dr. Camden had asked me if I wanted to do a blood test to see if there was a potential of anything wrong with our baby. I asked him if anything they found could be fixed in utero. After he told me no, then my question was,

So, the only reason to do the test is to give me the option to terminate if something was wrong?

That would be some people’s choice he said.

Well, it’s not my choice I told him. I will take whatever God gives me

Now, looking at our newborn baby hooked up to a ventilator, wires, and tubes, I had the feeling God was about to put me to the test.

The moment was finally here and we were ushered into a private room. There at a small conference table sat a social worker and the geneticist, but not our geneticist, as ours was still on vacation.

Dr. Gen began by writing numbers and Xs and Ys on a pad of paper while the rest of us sat quietly. When he was finished, he turned the pad of paper toward us and explained that the pairs of numbers 1-22 we were looking at represented our chromosomes. 1 being the largest chromosome. 22 being the smallest. He went on to explain that each of us get a single set of 22 chromosomes from each of our parents that create the pair. The 23rd chromosomes are two special chromosomes X and Y that determine our gender. I was grateful Dr. Gen was explaining this crash course in genetics in simple layman’s terms, but I had this sinking feeling in my gut that we were about to be hit with a bombshell.

A third copy of a chromosome is called a trisomy. he said.

Trisomy There’s that word again. This was not sounding good.

A third copy of the 21st chromosome is trisomy 21, or Down Syndrome Dr. Gen continued.

Down Syndrome I was ok with. I could start to see where this was going, I just did not know where it was going to end up. And then the bombshell hit.

What your child has he said, is trisomy 13, or Patau Syndrome. A third copy of the 13th chromosome.

He then listed off anomalies characterized by trisomy 13. Cleft pallet, cleft lip, holoprosencephaly, meaning the brain fails to divide into two hemispheres, small eyes, visually impaired, blindness, heart defects, neurological defects, seizures, apnea, feeding difficulties, breathing difficulties, kidney deformities, rocker bottom feet, simian creases in hands and feet, low set ears and severe mental retardation. Then he finished by saying,

Your child will never walk, never talk, laugh or smile. He will never know you. He will be a vegetable. He will have ‘No quality of life’. He is going to die.

A flood of tears welt up inside me. I could not believe what I just heard. I was numb. Having a child with developmental and physical delays were not an issue for me. I always thought if I ever did have a child as such, we would just change course. Instead of being the soccer mom, I would be the Special Olympics mom. Instead of Jr. rodeos and 4-H horseshows, we would do adapted riding and special kid’s rodeos. I thought I had this. But what I was not prepared for was to hear my child was going to die.

I could not quite wrap my brain around WHY my child would die. Why did 95% of babies born with trisomy 13 would never see their first birthday. Most of the heart defects mentioned were not life threatening. Other defects were corrected in Normal children with surgeries. Why would you not correct them in children with trisomy 13? Many children have seizures. Why would a seizure be life threatening for a child with trisomy 13? Blindness? small eyes? rocker bottom feet? Low set ears? Cleft pallet? Those are not life threatening. So, what was it about a baby with trisomy 13 that they could not survive?

I ask Dr. Gen these very questions. He explained that the extra copy of the chromosome causes confusion when developing. And since the 13th chromosome was much larger than the 21st, there is a whole lot more that can go wrong in the genetic make-up.

One day, you will wake up and he will be gone he said.

I looked at the social worker who was watching our reaction. I now understood why she was even there. To get this kind of information is devastating. They never know how parents will react to the news of a child with a poor prognosis.

I could no longer speak. I could not focus. My world had just crumbled. The joy of having this child and the dreams that I had envisioned, shattered into tiny little fragments. I did not know if I could ever put them back together.

My Husband who is normally more