This is the story of a wonderful baby
boy named Rasheed. Rasheed lived 5 glorious months on earth but his
final destination was heaven. 6 days after Rasheed was born he was
taken back to the hospital because his respirations were high and I
noticed his nostrils were flaring. A little baby's nostrils should
never flare, and his little heart was beating so fast I thought he had
a vibrator in his chest. Rasheed showed no signs of discomfort. He
cried and ate and slept practically all day long except when he was
hungry as most newborns do. When Rasheed was taken to the first
hospital the doctors said he looked fine but his respirations were
high. They listened to his heart with a stethoscope and said that it
also looked fine. The doctors initially thought that maybe he had come
down with pneumonia or some strep infection but when he went for a
chest x-ray they saw his heart looked enlarged. Then they told my
husband and I that we would have to take him to another nearby
hospital that had paediatric cardiologists on staff. So to make along
story short we rushed to the next hospital and Rasheed was taken in
there. The following morning we were visited by a paediatric
cardiologist who examined Rasheed and gave him an electrocardiogram.
After the doctor consulted his fellow colleagues he had a conference
with me. Dr. Consevage told me that Rasheed had a rather rare
congenital heart defect by the name of HLHS or hypoplastic left heart
disease. He went on to explain that Rasheed was very fragile and that
the reason his respirations were so high was because the tiny opening
at the top of the heart where Rasheed was pumping out the blood to his
body was staring to close. He went on further telling me that Rasheed
would need a series of Heart surgeries and maybe eventually ah heart
transplant. "This is something that we can fix", were his words. I was
told that I was very fortunate to be at HMC because a lot of hospitals
do not have the know-how when it comes to dealing with the disease
that Rasheed had. The disease was so complex because of the fact that
Rasheed's left ventricle never formed in the womb. They thought it
amazing that the problem was never corrected.
Rasheed had open heart surgery and it
lasted 8 hours. My husband and I did a whole lot of pacing and
waiting. After the 7th hour the surgeons nurse came and told us that
Rasheed was off the heart-lung machine that they use to perform the
surgery and was resting well. He would be brought back upstairs to the
PICU after they monitored him for a while. I will never forget what he
looked like after they brought him back. He had this little tiny
incision on his chest, and he smelled like baby lotion. I stayed by
his bedside and brushed his hair. He loved when I did that. The
doctors told me that over the next day or two they would just let him
rest and let his body adjust to his semi-corrected heart. After 3 days
they started to let him wake up. He would try to breathe over the
ventilator and choke on the tube. It was a sad thing to see, but he
was alive.
Before I would be allowed to take
Rasheed home I would have to teach him to nurse again. A lot of times
when babies are on ventilators they forget how to suck, but after 2
days of trying Rasheed caught on. Then I had to learn to give him his
medications using a syringe. Rasheed was on 4 different heart
medications and it was very hard to get him to take them. I was
terrified of taking him home with me in this state. He was so fragile.
Rasheed came along very well after
his first 2 weeks out of the hospital. He slept a lot but the doctors
said that was normal because he only had one functioning side to his
heart. I was concerned though because he was always hungry and it
never seemed as if he was getting enough. Another concern was that he
would not cooperate when it was time to get his medicine .He would
scream and choke it back up, and I would have to call the doctor
constantly about it. Rasheed was seen at the doctors office alot.
Sometimes he would be seen 2 times a week I was so scared. If Rasheed
coughed 1 time I would call the doctor. Fear consumed me.
The first week of June arrived and I
was scheduled to have a tubal ligation. After the surgery I
recuperated at home with Rasheed but towards the end of the week he
started turning funny colours and sleeping without waking. I would
have to wake him. I called the doctor and they assured me everything
was fine with him. On the 8th of June at 3 in the morning I was
changing his diaper and trying to console him. He would have none of
it. Then in the prescence of my husband, brother and I he simply
stopped breathing and turned totally blue. I PANICKED. I raced around
the room, and my first thought was of killing myself. My brother
called 911 and then he shook me and said, "YOU HAVE TO DO IT", and
without thinking I dropped to my knees and tilted Rasheed's head back.
I listened. Nothing. So I put my head to his chest. Nothing. Then I
put my mouth over his and gave him breaths. Then I performed chest
compressions, I did this 5 times. By the time the police and ambulance
arrived he was breathing and his heart was beating again. I ran around
screaming and hollering I had so much adrenaline.
When the ambulance arrived they took
Rasheed and gave him oxygen because his pallor was not good. He was
very blue and his vital signs were not strong. I rode with the
ambulance and my husband took the car. I could hear Rasheed struggling
to cry in the back as they tried to get an I.V. line started in his
hand. It was the longest journey I have ever been on. I kept praying
frantically that he would just hold on. Just please hold on. Finally
we made it to the hospital, and the paramedics rushed him into the
E.R. My husband and I were told to wait in the special room that they
reserve for Trauma patients families. We were a bunch of live wires. I
remember a chaplain coming in with us and me screaming at him WHY ARE
YOU HERE!!! I felt as though my life was over. After what seemed like
forever a doctor came in and said that Rasheed was stabilized and his
heart rhythm had returned to normal. He would have to stay in the
hospital for some time until they could figure out exactly what went
wrong with him.
Rasheed slept peacefully and without
incident for the rest of the night. I was so worked up that I could
not. The doctors and several family members would tell me that I
needed rest, but it would not come to me. I would not dare rest after
what had just happened to the baby, so I stayed by his bedside until I
was going to fall over myself. The doctors came in and questioned my
husband and I about what had happened and the only conclusion that hey
could come up with was that he had maybe...maybe choked? They ran
every test imaginable and then I was told that little man had a reflux
problem. They said all of his symptoms (vomiting his medications) were
concurrent with this problem. So they started him on Zantac and sent
us home with a heart monitor. The heart monitor was supposed to go off
anytime there was a sudden change in heart rhythm or in case he had an
apnoea spell during the night. The machine would make this ear
piercing screech that would awaken us. Rasheed would pull the cords
off his chest sometime or try to eat them. For him to be so sickly you
would never even have guessed. He was constantly trying to stand upon
my lap, and he loved to play with people. My daughter was so delighted
with Rasheed I would have to explain to her constantly that boys don't
wear earrings and carry purses. I would leave the kids in a room
together and come back and she would have him propped up on some
pillows telling him stories and putting clip on earrings on him
(smile)
We had the best time with that little
baby.. He certainly changed the whole definition of motherhood for me.
Rasheed started showing signs of
illness as far back as that first week in June. The signs were
clearly overlooked by the doctors that were seeing Rasheed. In his
last month here on earth, I made at least 7 trips to the doctor and
the hospital. Rasheed's apnoea alarm would go off all the time.
Sometimes when he was wide awake it would go off, other times when
he was asleep it would sound off. I was very worried by this and in
the last month I made several phone calls. I would always call and
get the same answer, "If he looks okay, then he's fine." Then he
would sleep all the time again, it finally got to the point where he
would cry and sweat profusely. I refused no for an answer. I took
him to the doctor constantly. I would run all of the air
conditioners in the house and Rasheed would still sweat. Rasheed was
due to have a heart cauterization in September, I did not think he
could wait that long. So I took him to the doctor and demanded they
give him an Electrocardiogram. Upon examination the doctors all said
he was fine and that I just needed to relax.
On August 28,2001,Rasheed went into
the hospital for the last time.
Rasheed had been crying
inconsolably for some time and then would stop because he was so
tired. I would try to comfort him but he would not stop. So I called
for the doctor and was told they would see him later in the
afternoon. After hanging up I decided to just Go take him to the
hospital...something told me that was right. Upon arriving at the
E.R. I explained that Rasheed was irritable and turning colours.
They immediately took us into the E.R. and measured Rasheed's pulse
oxygen (measures how much oxygen is in the blood) and the numbers
were very erratic they would go from 70 to 15 in a matter of
minutes. They mostly stayed at 20. This is way to low. There was not
enough oxygen getting to his little brain. I was frantic.. something
in me knew.. it just knew.. So I tried to keep it together but I
could not do so. I cried and rocked my baby while they tried to get
an I.V. started. I fed him and he nursed. That was the last time
that I held him in my arms and nursed him. I am having such a hard
time writing this. I am trembling....The cardiologist on call told
me that Rasheed was experiencing severe heart block, and would
eventually need a pacemaker after he was stabilized. He said that
this condition was very rare in a person with HLHS and Rasheed was
among the first he and his colleagues had ever seen. I was
delirious. I could not see straight.
Rasheed's nurse asked me if I would
like to help her carry him up to the Picu and I said Yes. When we
got upstairs the nurses told me that I would have to wait outside
for him or go home and get my husband because they had to try to get
Rasheed stabilized. I changed Rasheed's diaper and sang a little
song to him...He was so quiet...So sweet. Then I picked him up for
that last time and gave him a big kiss. Then I handed him to the
nurse. They would not let me see him again after that for over 24
hours.
After waiting all night the nurse
came out and told my husband and I that they were still having some
trouble getting an I.V. started. They were able to get a temporary
pacemaker hooked up to him and his heart was pacing regularly.
At three o'clock the doctor came
and told us that Rasheed had taken a turn for the worst and that we
would not be able to see him until they figured out what was wrong.
Again after waiting for another 4 hours another doctor came out and
told us that Rasheed had suffered a heart attack and that his liver
and kidneys were shutting down. He told us that all we could do now
was to wait. Rasheed had coded on them and after 9 minutes they were
able to get his heart started. They were taking him off the
sedatives to see if he would wake up. I collapsed in the corner and
refused to hear what he was saying to me...I had been to that
hospital plenty of times before and had already seen many children
dying. Some of them were Rasheed's roommates. I knew very well what
"We are doing what we can meant."
My husband and I went to the nearby
waiting room and sat down. There were so many thoughts running
through our heads that for awhile neither of us could say anything.
We just sat there like bumps on a log. Finally he said to me
,"Angel, you know what we have to do.." And then I lost it. I
vomited.. There was a feeling of overwhelming sickness in my body.
My heart felt as though it would stop. I could not hold a thought
for more than a second. So we sat there and held each other and
cried..
Our family members started to show
up at the hospital, and it was the worse thing because we had to
explain over and over what was wrong with Rasheed. It got to the
point where I went off and isolated myself from everyone. It was so
quiet in the sunroom that you could hear a pin drop. I sat by a
window and looked out at the sun and trees and tried to tell myself
that maybe he would come out of it all. He was such a fighter.
The following evening I knew that
my wish would never come true.
Rasheed started having seizures
that involved the right side of his brain. The doctors were
concerned because he was no longer on sedatives and was showing no
response to stimuli. His body temperature would rise and fall and
his kidneys and liver were still failing. Amazingly his heart was
fine.
The doctors told my husband and I
that they thought it necessary for Rasheed to have a brain death
study.
We said okay.
After the brain study the doctors
said that Rasheed had brain activity, but they had never seen
someone with so much fluid on the brain survive. Then they suggested
that we go home and rest because the next day would be a hard one
for our family.
The next day we arrived at the
hospital in time to see them making a mould of baby's hand. I broke
down and collapsed on the floor. I had seen them do this procedure
with other dying children. Then the doctor came in and told us that
they had done everything humanly possible for Rasheed...Just like
that...There was nothing else to do. He thought it would be best for
us to let Rasheed go with the Angels... he wanted our permission to
take him off of the life support....
My mother called a priest and
Rasheed was given his last rites...I collapsed again during the
reading of these rites...It was all too painful for me. And then the
doctor came back and told us that Rasheed would never feel a thing.
He and a nurse turned off his heart monitor and drew the curtains. I
was given a rocking chair and Rasheed's ventilator was turned off.
I held him for the last time.....I
watched as he went home to be with our father... It was a moment I
will never ever forget. The doctor came in after a moment and took
his pulse and told us that he was gone. I passed him over to my
husband and other family members and after they held him ..I held
him again. Just one final time. He looked so different yet so like
himself. I cried and rocked my baby and told him how much I loved
him...How much mommy loved him...Mommy loves you Rasheed, I
whispered to him over and over again.
As you may have realized by now, I
have left out quite a bit of Rasheed's story. A lot of it is just so
painful that I am still not ready to disclose it yet. There are so
many of these things that even my husband and I have not said to one
another for fear of hurting the other partner all over again.
The truth of the matter is it is so
devastating to lose a child. no one can understand that unless they
have faced this great obstacle. So I am sure that you will try to
understand why some things are better left unsaid........
