Joseph has been gone twelve years and I still find it hard to discuss or write a bout him and
his short life. He was born on September 15th, just before my birthday, and died on October
8th, twenty-three days later.
During the pregnancy I was mildly pressured into having an ultrasound and amniocentesis. I
went in for the ultrasound but refused to sign for the amniocentesis after reading the
permission form. So far as I was concerned there was too much risk for a test whose sole
purpose was to determine if a pregnancy should be terminated due to a genetic problem. I
would not have had an abortion no matter what the results were, and did not want to be
pressured by the doctors throughout my pregnancy to do so. I do not regret that decision
even after having delivered a baby with a lethal genetic defect. Joseph lived, we enjoyed his
presence in our lives for as long as he was there. I would not trade that for anything.
Granted, I would not want to or knowingly volunteer to go through this again, but I have gone
through it and found some of the greatest blessings I have had because of it.
The entire pregnancy was difficult, and I was relieved that I was induced and delivered two
weeks early. The delivery was as difficult as the pregnancy itself and required 24 hours in
recovery before being moved to the ward. I saw my son for about thirty seconds after he was
born, because they were rushing him off to the newborn nursery. I only saw his face as he
was already wrapped in a blanket, I was not allowed to hold him. I was surprised by what I
saw - a severe cleft palate. At that time, I felt concern for my son but was not even
considering that he would not be with us for long.
I was not to see him again for a couple of hours. If the doctors had their way I would not have
seen him at all. My husband and nurse insisted that I be allowed to see him before he was
flown to another hospital. The only way this could be accomplished was to wheel me into the
newborn nursery in my hospital bed. I was allowed to hold him for five minutes and he was
taken away to be flown to the children's hospital so his needs could be met and a diagnosis
made. I did not know what was wrong other than the obvious cleft palate. I would not see him
again until I was discharged from the hospital. Those five minutes were some of the most
precious moments I had with him. I will always be grateful for my husband and that nurse
doing this for me.
After that I knew in my heart that he was going to have a short life, but did not want to face it,
so I informed my doctor that I did not want to be told what his diagnosis was until after I was
discharged because I needed the time to recover. They honored my wishes. I struggled with
this the entire time, praying that he would not be taken from me, begging for his life. I was not
given peace over this, I was left to struggle until I was willing to accept whatever was to
After my husband took me home, I was given a pamphlet about Trisome 13. I read it and
asked my husband, "So, do we have a statistic or a miracle?" I wanted to know if our son
was going to live or die, and it was totally unfair to put my husband in this position because
he did not know for sure.
I did not go to see Joseph because I was physically weak and exhausted. Emotionally I was
wiped out, full of fear, and unwilling to get attached to a baby I could not keep. My husband
could not convince me otherwise.
I prayed more, asking why, asking for answers to many other questions. The only answer I
was given was to go to my husband and ask for a blessing. The next morning after all the
kids left for school and only my two year old son was home, I asked for the blessing. I was
given the answers to all my questions, instructions on how to proceed and why, and peace in
my heart and mind. It was enough. My husband found a sitter for our son and took me to the
hospital where Joseph was.
I was nervous right up until he was placed in my arms. Joseph was my seventh baby and
sixth son - instinct took over and I relaxed. I was a mom, I loved this child, and he was as
helpless as any other newborn. I could feel his spirit and he knew who I was. The nurse said
that this was the first time he had not fussed since he arrived, my touch and presence was
what calmed him. It was obvious that he needed me in his life and I needed to put aside my
fears and be his mother.
One thing I have learned about myself is that the one thing that I have that overrides my fear
is the needs of my children. I will do what ever it takes (that is legal) to get their needs met, if
it is in my power to do so and they cannot help themselves.
I had missed Joseph's first three days of life and did not want to miss anymore. However, my
first visit with Joseph was rudely interrupted by the doctor taking care of him. He came into
the room and tried to force us to allow a "do not resuscitate" (DNR) order to be signed. He
went so far as to quote scripture at us to convince us to do as he wished. What was even
worse was that he ordered the nurse to take Joseph from me and return him to his bassinet
because he assumed I was not listening to him. That infuriated me. I did not stop the nurse
from doing her job, but I left an order with the nurse that the doctor was not to come near me
again at any time while I was there, that he was to confine himself to conversing with my
husband. That nurse made sure it was honored. Ten days after his birth we gathered our
family and some friends, with our bishop and gave Joseph his name and blessing. After that
was done we gave permission for the DNR to be signed. Joseph was in the hospital for
eleven days and transferred to a hospice center where his care changed from keeping him
alive to allowing him to pass away comfortably.
It was much better being with Joseph at the Hospice center than at the hospital. At the
hospital he was hooked up to a myriad of monitors that beeped and squealed when
something went wrong. At the hospice these were all gone, he only had an oxygen tube in
his nose and a feeding tube down his throat. It was easier to hold him and care for him. We
knew that he could leave us at any time, so we tried to make the most of our time with him.
We were able to have a family friend come in ant take family pictures, come and go as we
pleased, and the staff not only watched over Joseph, but they watched over us too.
Joseph, age 2 wks
(15 Sep - 8 Oct)
The death of a child is heartbreaking, the death of your own child is even
worse. The only think I can imagine that would be worse than the death of
your own child is the death of your spouse. I have never experienced
anything that was so painful, not even when my mother died, and that
was bad enough. When my mother died, she was gone and I missed her.
When my son died a piece of me died with him.
I am going to share Joseph's story but need to say a few things first. I am
going to write about the helpful things others did for us, and the unhelpful
things that were done. I will explain why each was helpful or not. I will
include my impressions of life after death, of the joy of having our son for
the short time we did, and some of the things that have never stopped
despite the passage of time.
First a few facts about Joseph. He was born with a genetic defect -
Trisome 13. This defect affects the 13th chromosome by having three
parts instead of the normal two. When this defect occurs, all the organs
that reside midline in the body are deformed. The more complex the
organ the worse the deformity. Consequently, this is a lethal defect. The
brain is a midline organ and is the most complex, therefore is the most
deformed organ in the body. Eyes, the heart, mouth, genitals, stomach,
and lungs are most often the next severely damaged. Our son had all of
this and six digits on his hands and feet. His cleft palate was so bad that
there was no division between his throat and esophagus, consequently,
he had to be fed through a tube. He required oxygen all the time, and had
to be either laid on his side or propped up so mucus and saliva did not
get into his lungs.
The doctor said he could not hear or have any thought processes. We
discovered that he would startle at a loud sudden noise just like any
other baby, he responded to touch the same way any newborn does. He
would deliberately open his one good eye and look at whom ever was
holding him. He had opinions and expressed them - joy over being able
to suck on a pacifier, anger at being hungry or needing to be changed,
being soothed by his mother's touch. Due to the Trisome 13, Joseph had
apnea (breathing stops or is irregular), when he had stopped breathing
enough times to cause additional stress on his body, he simply stopped
breathing and did not resume. Once his heart stopped beating he was
Joseph began having more apnea spells that we
were witnessing. The doctor explained to us that
each spell caused brain damage and weakened his
body, that eventually this would cause his death.
There was a day that I was holding him that he
started choking and then went into one of these
spells. He appeared to me to have died. The nurse
and doctor were with me and when I stepped back,
they listened to his heartbeat, it was still beating. To
be declared dead his heart had to stop. While they
waited, listening, I was crying. To my great
astonishment, Joseph started gasping for breath. I
asked the doctor if this was reflexive breathing or if
he was alive. She said she was not sure, but his
color returned to pink, and he began breathing
normally. I was in shock at this point. The nurse
handed Joseph back to me after I sat down, and
asked if I would like her to stay with me for a while. I
took her up on her offer because I was really shaken
up. They had called my husband while this was
going on, so when he arrived the nurse left us alone.
A couple of days later, Joseph began having these spells frequently. We knew that this was
the beginning of the end. My visiting teacher brought my husband in and our Relief Society
President came and spent the evening with us. We watched Joseph go through three more
spells that evening, each time my husband held him, talked to him, and comforted him
Around ten that evening I decided that I needed to go home, my husband decided to spend
the night with Joseph. My visiting teacher had been waiting for me to say I was leaving
because she knew that she was going to be driving me home. The Relief Society president
stayed with Joseph and my husband until about four in the morning, when she went home to
get a little sleep.
Joseph departed this life before I was able to return the next morning. My visiting teacher
was on her way to get me when she took a call from my husband. He told her that Joseph
was gone but to not tell me, that he would when I got there. This was a difficult task for her,
but she honored his request. She had a friend call my house and tie up the phone so no one
could call and shock me with the news. The drive to the hospice was probably the longest
she has ever taken, she could not get me there fast enough, but it was raining and she had
to slow down a little in order to be safe.
When we arrived I walked down the long hallway to Joseph's room. I had to pass all the staff
offices, all of which had their doors open. Each offices occupant looked up and saw me,
then quickly looked back down at their desk again. They all knew who I was. At the time I
thought this was strange, but did not question it because I was intent on seeing my son
again. When I got to his room, my favorite nurse stood up and rubbed my arm on her way
out the door, at the same time giving me a look that was filled with sadness. I was really
confused by then.
I turned back to see Joseph and found Bruce standing there holding him in his arms,
wrapped in a blanket. He smiled an sad smile and told me that Joseph was gone.
Outwardly, my mouth dropped open; inwardly I was screaming NO! I fell into a chair that
happened to be behind me and the tears started. Bruce held me for a few minutes then
asked if I wanted to hold him, I nodded yes and he was placed in my arms.
It was the first time either of us had held him without any tubes attached to him. I bent over
his lifeless cold body and sobbed because my heart was breaking. The pain was
unbelievable. We were joined by my visiting teacher and our Relief Society President shortly
after that, and spent a couple fo hours reconciling ourselves with this loss. The nurse came
in and informed us that someone was going to be there soon to collect his body and asked
us to let them know when we were going to leave so they could say goodbye to him also.
Bruce and I left shortly after that.
We had a hard time driving away because we were leaving our son for the last time, we
knew we had to leave but doing so was difficult because we were being forced to face the
reality of his death. We left because our other children were going to be coming home from
school soon and we needed to be there for them. When we were all home my husband and I
told them that Joseph was gone. Our oldest son knew that he was already gone, he had felt
Funeral arrangements were made, and we were driven to the mortuary by our bishop so we
could sign papers and choose a casket. We asked the staff to not bring out the actual
casket, but they did anyway. Neither of us could speak when we saw it, all we could do was
cry. Our bishop asked us yes or no questions so we could nod or shake our heads in order
to get the process over with. The casked was so tiny. It is just wrong for parents to bury their
children, it is not the natural order of things. Adult children are supposed to bury their elderly
parents. The only thing that made seeing this bearable at the funeral was a comment made
by our Relief Society President. She said it looked like a jewel box and it was holding a
precious jewel inside. Burying that precious jewel was just as hard as driving away from the
hospice center where he died.
When we were home again, and had resumed our less than normal life, I found it difficult to
drive places because of the reminders - the funeral home were we chose the casket was on
a routine route of mine, seeing someone else holding a baby, seeing a pacifier, baby
clothes, a turnoff on the freeway, certain people - all triggered memory and pain, reminding
me of this great loss. At first I described these events as tidal waves crashing over me,
gradually they became less frequent, feeling more like regular ocean waves. The powerful
emotions began to subside into manageable times that I could cope with easily.
Over the years I have found that I am not triggered by things anymore, I find that I do not
have waves of any kind crashing over me, but I have not forgotten my son. Every year
around the time of his death I have a short bout with unexplained emotions - unexplained
until I remember that this was the anniversary time for Joseph. He has been out of my life for
twelve years, but he remains in my heart and will never be forgotten.