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"But Noah found grace in the eyes of the Lord."
"Noah truly
impacted more lives in 10 days than many healthy people will
do in their lifetime. Now that in our opinion is not only
worth any pain we may be suffering but that is “quality of
life.”
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Our tough journey with our son Noah didn’t begin on Friday March
13th 2009 which also happened to be National Trisomy 13 Awareness
Day and Trisomy Awareness month in Alaska. Our journey really didn’t
begin in the fifth month of my wife’s pregnancy on January 21st when
we went in for our ultrasound and we were told about our baby
possibly having Trisomy 13. Naturally one of the happiest days in a
married couples life is the day they realize they are going to have
a baby. However for whatever reason my wife never really did feel
just right about the pregnancy. I can remember like it was yesterday
the day last August when my wife made the announcement of her
pregnancy to me, and with tears also saying that she didn’t feel
right inside. That was really the day that our Journey with Noah
began. As a matter of fact during her entire pregnancy she
maintained that she felt like something was wrong.
This being said there have been times throughout this journey that
have been more difficult. I think about the ultrasound. We actually
had two ultra sounds the initial one we both noticed that the tech
wouldn’t really give us a clear image so we left feeling kind of
strange but since we were only informed that our baby was a boy that
uneasy feeling turned to a sense of relief, considering the feelings
my wife had been experiencing. About an hour later as our family was
celebrating the soon to be birth of our son over pizza, our hearts
seemed to fall when we received a call from my wife’s doctor that he
wanted us to have another ultrasound with a specialist; to take a
closer look at some concerns he had about the heart and possibly
cleft palette.
The rest of that evening and the next morning were very apprehensive
to say the least. During the next appointment as clearer images of
our baby were being shown to us by the specialist, medical terms
seemed to almost mumble in our minds as we were attempting to
process the bad news. However certain terms did make themselves
clear to us. Terms like abnormality, Chromosome disorder, lethal
condition, mother’s safety. Of course the term early termination was
mentioned several times as being the more favorable alternative to
enduring a dangerous pregnancy. Soon feelings of apprehension turned
to a feeling of fear at what lied in store for my wife and our son,
especially when our son’s abnormalities were made clearer to us. The
doctor told us that our baby had an extra digit on each hand and
foot; a bi-lateral cleft palette and lip, rocker feet, a hole in his
heart and well as an enlarged heart, and several other heart
defects. If the baby were not stillborn it would not live more than
a few hours. We did agree to an amniocentesis to confirm the
diagnosis but only for purposes of knowledge not termination. Let me
say here that we are Baptist and believe God according to the Bible
is not only the giver and taker of life but He is also the sustainer
of it. According to his word in Isaiah 49:5 and Jeremiah 1:5 the
life of the child begins at conception therefore we are completely
pro life. Nevertheless we are very compassionate towards those with
the same sense of fear that are at this very moment faced with a
decision like we were faced with to terminate a life prematurely.
Especially after being faced with the temptation ourselves to do the
very thing that we are completely against.
We spent the next several hours, weeks, months just as if we were
going through the motions of not really carrying a life but more so
carrying an abnormality. Things that we had done to prepare for our
previous sons birth we failed to do for Noah. Things like playing
classical music, Bible reading, and talking to our son while in the
womb. Wondering in the back of our minds were we really doing the
right thing by my wife carrying the abnormality. I guess for lack of
a better explanation we had really lost perspective on why we were
carrying the child; it was more that we were carrying him because we
were supposed to and not because he was a gift from God. As far as a
spiritual explanation I guess you could say we kind of lost our
faith even though we were carrying out the pregnancy in faith.
However at each passing day we were faced with more challanges as my
wife’s health continued to decline. First her weight was an issue.
She had already put on 30 pounds more weight at 5 months than she
had at full term with our previous son, most of which was water. She
could no longer wear any of her shoes and had to go out and buy
loose fitting house shoes 3 times her normal size, and her blood
pressure became increasingly dangerous. Looking back at it now we
can see that God’s hand was in every aspect of her pregnancy, up to
and including the decision to deliver Noah a little early.
Since the time we found out about Noah having Trisomy 13 we prayed
that the Lord would allow us to deliver him vaginally. It was our
desire to deliver our previous son Levi that way however
complications prevailed and we were forced into delivering him by
c-section. By this time my wife had developed a pretty common
condition known as Preeclampsia that had become dangerous not only
to her but to our son Noah. So after a point that we felt he was
developed enough he could survive if born we decided to go ahead and
induce labor, this would also give us a better chance at a vaginal
delivery as Noah was still a couple of pounds smaller than Levi was
at birth. We had planned on delivering the following week however
our doctor called on Wednesday the 11th of March and said some
things had come up and he wanted Lisa to be admitted on Thursday the
12th. After we checked into our delivery room the head NICU doctor
on duty came in to discuss our options. As we began to discuss life
sustaining options it began to occur to us that the first time that
Noah being still born was not discussed as certain, that his being
still born was not one of the likely scenarios. We discussed that
when Noah was born we would let him try to breathe with the help of
God on his own. If he needed some assistance then we would give it
to him but if we found out for certain that his heart could not
sustain his life then we would limit the assistance he would
receive. Looking back on it now we see that the doctors even though
more optimistic that he would be born never really expected him to
make it more than a few hours. Nevertheless as the hours passed and I began to pray, and the Lord
began to speak to my heart about something in his word. I opened my
Bible and the Lord guided me to a verse that I will never forget
Genesis 6:8. “But Noah found grace in the eyes of the LORD.” I began
to realize that none of the things over the past many months really
held any significant bearing on Noah. As the Psalmist said in Psalm
139:14 “I will praise thee; for I am fearfully and wonderfully
made:” That no matter if Noah made it through the delivery, or
whether he lived 5 minutes, 5 days, 5 months, or 5 years, God
doesn’t make mistakes. This is thinking that the medical industry
doesn’t want you to consider when dealing with a baby with Trisomy
13. To them these babies are nothing more than a lethal abnormality.
However we realized that Noah was not just an insignificant
abnormality he was a soul that was living, breathing, feeling, and
thinking. That no matter the outcome he is one of God’s and God will
bestow grace upon him whether in life or death. That at the very
least God would take him to Heaven without him having to spend much
time in this unforgiving unmerciful world which would be greatest of
all blessings. Either way Noah had found grace in the eyes of The
Lord!
Now the time was at hand; the day that the medical industry turned
what should have been a day of excitement and jubilation into a day
of dread, God had turned back into a day of excitement. The
contractions that had started late Thursday night became very strong
and the labor began to progress very fast and after about 20 minutes
of hard labor Noah Patrick McCoy came into this world on Friday
March 13th 2009. Not a perfect baby by the worlds standards
nevertheless one the most beautiful babies we have ever seen. As I
cut the cord I don’t think there have been two happier parents in
the world. Apparently delivery came just in time as Lisa’s placenta
had several lesions. The nurse present said that if she would have
carried Noah much longer it would have had a complete placental
abruption.
They immediately took Noah to the NICU to check him out and then the
next phase of our journey. By the time I made it to the NICU they
had already began doing some things to help Noah with his breathing
but we began to be increasingly encouraged as he was very responsive
to our voices, and our touch. Even though his heartbeat seemed very
strong we did try to keep our optimism somewhat stifled at least
until we could get an ultrasound on his heart. Later as we watched
the heart specialist check him out then she told us as she ruled out
one heart problem after another until soon she admitted that she
didn’t see any of the abnormalities mentioned from the original
ultrasound. Once again Genesis 6:8 came to my mind. Not only was
Noah not still born, and not only did he not have the extra digits
on his feet, nor was his rocker feet as bad as we were initially led
to believe but now our main fear had been turned into joy. His heart
was working like it was supposed to.
It would be wonderful if the story ended here however Babies with
Trisomy really aren’t treated like other babies even though their
symptoms may be exactly the same as a baby without the Chromosome
issue. This became more and more evident in the 10 days that
followed. From Friday March 13th to Monday March 23rd it was as if
we were in a constant battle both physically and spiritually for our
sanity and our sons life. It seemed that as one shift of doctors and
nurses left with a mood of optimism they were replaced with a staff
that was pessimistic towards Noah’s prognosis and future. In those
ten days we learned more about the medical industry than we knew
before. Most of which we would have just as soon not known. Of
course we had heard some horror stories from contacts we had made
through the Living with Trisomy website and others that had gone
through what we had but you don’t really know what others are
talking about until you experience it yourself. I remember one
instance when a doctor approached me about Noah and his prognosis
and quality of life not being favorable. When he was through with
his speech I looked at the doctor in his eyes, pointed to my son and
told him that I wasn’t calling him a liar but I didn’t believe a
word he was telling me. As I pointed to Noah I explained the reason
was because my son wasn’t even supposed to be here much less make it
past a few hours or day. So he would have to forgive me for not
believing him because I know God is really the one in control of
Noah’s quality of life.
Another significant battle that will always resonate in our minds
occurred on the 5th day when we were given some false information
about Noah’s health. We had taken a few hours prior to the shift
change and went to get some rest, the next morning the doctor and
respiratory therapist on duty told us that while we were gone Noah’s
lungs had been damaged due to the pressures from the respiratory
assistance he had received. We were advised that the best thing to
do to keep Noah from suffering was to take him off the ventilation
machine. We almost immediately found ourselves surrounded by support
staff in assisting us with making this decision. It was almost as If
the hospital was more morbidly supportive about letting him die than
helping him live. As we left the NICU to make the arrangements we
began thinking about letting him go. While we were not happy about
the prospect we wanted to do what was best for our son. After all we
were led to believe he was suffering and we did not want that. By
this time we had developed a pretty good support group so as I began
telling them what we were considering they began to help encourage
me to not act too rashly. We began focusing on the fact that he has
a strong heartbeat, and other things that contradicted the
information the staff was giving us. It was at this point I realized
if we were going to be good stewards of this precious life God had
given us and if Noah was going to live another day we were going to
have to roll up our sleeves and fight for his life. We went in and
told the staff on duty that we had decided not to take Noah off of
the ventilator and we wanted a second opinion from another hospital,
and that I wanted a meeting with the hospital ethics committee.
Almost immediately the attitude began to change in the NICU. We did
have a meeting, were told he had improved, and things began to
change. We found out that Noah had not received any nourishment from
his IV’s only glucose, and other things that they could have been
doing they weren’t because of his so called lethal abnormality. He
did begin to improve and after a couple of days we began to feed him
his mother’s milk through a tube. He not only was keeping it down
but they had increased the amount they were feeding him
considerably. Unfortunately on the eighth day Noah began having some
complications.
Looking back now we are still not sure as to why only
that he was. Well to shorten this already long saga we spent the
next 24 hours running out of options. We began almost exhausted in
the fight. We have said from the beginning of Noah’s journey that
began on the 13th of March that we were not going to consider
ourselves a victim. That no matter what the doctor’s had or hadn’t
done, or what they were doing or going to do God is still in
control. Even though looking back we see that Noah and babies with Trisomy are not treated according to their symptoms but rather by
their condition. It is almost an evil ideology that overshadows the
medical industry so they cannot separate the symptoms from Trisomy
13. Nevertheless we cannot be victimized because God is the giver,
taker, and sustainer of life. One of the terms that kept us fighting
for Noah that the doctor’s used were “quality of life”. I began to
realize that although Noah was not the victim but the doctors were
the ones that were in fact the victims. Victims to medical and
preconceived ideologies as to what exactly “quality of life” is, and
who determines it. We decided to take Noah off the ventilator and if
God wanted him he was his to take anyway.
On March 23rd 1:00am Noah truly found grace in the eyes of the Lord
as we were holding him while singing hymns and reading scripture
Noah went home to be with the Lord! In ten days not only were our lives changed forever by our son but
we witnessed a change in several of the doctors, and nurse’s lives.
Noah truly impacted more lives in 10 days than many healthy people
will do in their lifetime. Now that in our opinion is not only worth
any pain we may be suffering but that is “quality of life”.
Pat, Lisa, and Levi McCoy
truth2ak@afo.net
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