Cassandra
Words cannot express the anticipation a
couple feels when they are awaiting the arrival
of a child. My husband and I have been blessed
with this feeling twice. We have three daughters:
twins, Kalyn and Kelsi who are five years old,
and Cassandra who is one year old. Cassandra was
born on June 24, 1998. We brought her home from
the hospital two days later, and thanked God for
our perfect and seemingly healthy baby girl.
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At home Cassandra nursed and slept
well. She did come home with a "biliblanket"
that was prescribed along with home health due to a mild
case of jaundice. Home health nurses came to our house
daily to check her bilirubin count and to make sure it
was dropping. At one week old, she was taken back to her
doctor for a check up. This visit went well. Her doctor
said that she looked good and was gaining weight.
At two weeks she began vomiting
sporadically. I called her doctor and took her back for
another exam. He said that she looked good overall and
was still gaining weight. He told me not to worry. At
three weeks the vomiting had become more frequent. She
cried a lot and was difficult to calm down at times. I
took her back to her doctor. He listened to her and gave
her a good exam. We discussed the possibility of her
being lactase/lactose intolerant. We decided to try a
lactose free formula. Her weight remained unchanged even
with the vomiting.
At this time, our doctor mentioned that
he was happy that he could no longer hear her heart
murmur. I was taken aback by this statement, as we had
never been told about a heart murmur. He stated that he
was satisfied that her patent ductus had closed. He
explained that it is not uncommon for newborns to have a
patent ductus related murmur right after birth, and that
it can sometimes take a few weeks for this to close
The formula was started and she was
still experiencing episodes of severe vomiting. It seemed
as if it would gush back up after feeding. I called to
see what we could do. I was told to wait and give her a
few days to adjust to the formula. By the weekend,
Cassandra seemed to be doing much better. I reluctantly
returned to my part time job. My mother agreed to watch
the girls for me. I called her to check on Cassandra
while at work. She told me that Cassandra was not eating
well and that she thought she had lost weight. My mother
told me I might want to call her doctor and get her seen.
I did
The doctor gave Cassandra a thorough
exam. He asked the Nurse Practitioner to come into the
room, and they both took turns listening to her breathe
and to her heartbeat. They both left the room. The doctor
came back in a moment later, and explained to me that he
was diagnosing her with failure to thrive and reflux. He
went on to explain that he had heard a heart murmur and
wanted to send her to a Pediatric Cardiologist. He said
that sometimes the medicines used to treat Reflux can
alter the heartbeat and with her having a murmur, he
wanted this diagnosed before he started treatment.
We made arrangements for Cassandra to
be seen by a Pediatric Cardiologist. We would be taking
her to the emergency room at the Children's Hospital. The
doctor told me before I left that, "if you rush up
there and are told that she is fine, then you can be mad
at me, but I would feel better knowing that she has been
thoroughly checked out". My family will be forever
grateful to him.
At the Children's Hospital we met the
pediatric cardiologist in the hospital waiting room. He
talked with us a short while and then asked us to
accompany him back into the ER. There, in the hallway,
they had an ultrasound machine set up. He explained that
the test they would be conducting was called an
echocardiogram. This would give them an internal picture
of her heart and show the cause of the murmur. During the
echocardiogram, the doctor stared at the monitor. His
face showed several expressions. After the technician
exchanged a look with him, I asked if something was
wrong. He just simply said "yes". I then asked
if it was something that could be medicated or if she
would have to have surgery. It was at that time that he
asked if we would join him in a consultation room.
Kenneth and I knew that something was
terribly wrong. Never in our worst nightmares did we
imagine what was about to take place. It took all of our
inner strength to follow him to the consultation room.
When we entered the room, he excused himself long enough
to grab a notepad. We all sat down and he did an
excellent job of explaining Cassandra's heart defect.
Kenny and I did not do very well
absorbing all of the information. He stated that
Cassandra had been born with just a small portion of her
left heart. This is a fatal lesion because this is the
side required for pumping oxygen/nutrient rich blood to
the body. I don't remember much about the conversation,
because after that point all I heard was "the most
common fatal heart defect in newborns, risky
reconstructive operation and possibility of death".
Cassandra was diagnosed with Hypoplastic
Left Heart Syndrome. We were told that this is a rare
condition that affects one out of five thousand babies
born each year world wide. I have since later heard
different statistics related to the number of infants
born with this defect. The mortality rate is still high,
but with a new modified procedure there is hope. We
agreed to have Cassandra admitted for further testing and
observation.
She was given a room on the pediatric
floor. All of the nurses that came in thought they had
the wrong room. She wasn't on an IV and did not require
any oxygen. She did not appear cyanotic in any noticeable
form. The next two days were filled with tests and
meeting an entourage of doctors, one of whom was the
Cardiothoracic Surgeon who would be operating on
Cassandra. He sat down and explained what this diagnosis
means and the options for treatment.
We were given three choices for
treatment: 1) Compassionate Care - which means
that we do nothing, take her home and love her until she
dies. No medical/surgical intervention. 2) Heart
Transplant - unlikely a suitable donor would be
located in time. The number of hearts needed for
transplantation far outnumber the hearts that are
available. 3) Norwood Procedure - If elected the
patient undergoes three open heart reconstructive
operations during their first two years of life. No
guarantee of success.
What other choice did we have? The
first two were not options. Time was something we did not
have. Because of her age, Cassandra was at a higher risk
than babies diagnosed before or right after birth. The
dangers were starting to accumulate. She is a fighter!
Why else was she still alive at close to five weeks old?
We were told that at six weeks, if left untreated, this
defect is close to 100% fatal. I asked the doctor what
his choice would be if she were his child. His answer -
to take a chance and opt for the surgery. I told him that
I wanted her to have the best chance for a normal life,
whatever that may be for her condition. The next two days
were spent preparing Cassandra for surgery.
At 6:00am on Thursday, July 30, 1998,
we took Cassandra down to the preoperative room. My
family took turns holding and kissing her. I told her how
much I loved and wanted her. I told her to be mommy's
little fighter and if the fight was too much that I would
understand. The OR nurse came and I had to do the hardest
thing in my life; hand her Cassandra realizing I may
never again hold my little girl alive.
The calls came about every two hours.
The surgery had gone smoothly and in a short while
Cassandra would be up to recover in the PICU (Pediatric
Intensive Care Unit). A call came at 2:00pm. The nurse
stated that they were having some trouble getting
Cassandra off the bypass pump. She stated that sometimes
this is not unusual. They would wait a bit longer then
try again. She called back at 3:30. They were still
unable to wean her off bypass. She asked me if I
understood what would happen if they were unable to
remove her from bypass. I said that I did. She explained
that the surgical team were discussing some options and
she would call back. I feared the surgery had proven too
much for my little fighter. The nurse from Pediatric
Cardiology came to the waiting room and asked to speak
with us out in the hallway. She explained that the doctor
would soon be up to speak with us. She went on to say
that the surgeon was considering hooking Cassandra up to
a biomedicus external assist device, commonly known as a Left
Ventricular Assist Device (LVAD). She told us that
she knew little about this device and that she did not
believe it had ever been used on such a small child.
We waited about an hour before the
doctor made his way up from the operating room. He
explained that Cassandra's heart would not squeeze well
enough to circulate blood and this was why she could not
get off bypass. He said that there is a device used in
older children and adult heart bypass surgeries. They
hooked Cassandra up to the LVAD. This machine
would allow her heart to recover while feeding blood and
oxygen to all her vital organs. An easier definition:
life support. This was a temporary effort to buy her time
for her heart to gain strength and start beating on it's
own. He told us that they had hoped for no complications
but that hopefully with time her heart would improve.
The OR nurse called and said that they
were on their way up to PICU with Cassandra. If we waited
in the hallway, we could see her briefly. Around 6:00pm
she arrived on the pediatric floor heading toward the
PICU. I went up to walk with the surgical team as they
pushed her down the hall. Her Doctor looked tired and
worried, and asked me if I would like to give her a kiss.
I bent over and kissed her on the forehead. My husband
said he thought I was going to jump on the gurney with
her. I do believe the thought crossed my mind!!
Her doctor told us that he would be out
to speak with us as soon as she was stable. It was not
too long afterwards that he appeared in the waiting room.
He explained that this was the first time he had ever
used this device on a child her age. He was not sure how
she would do. He reassured us that if this had not been
tried that Cassandra would have died in the operating
room. We expressed our gratitude for his ability to think
quickly and for the attempt to save our daughter's life.
He went on to explain that she was a very sick little
girl and was not "out of the woods" yet. He
stated that since the LVAD is an external device that her
chest was open and is at an increased risk of infections.
We thanked him for his honesty with us.
Cassandra remained on the LVAD for
seven days, and her chest could not be closed until the
following day.
One week later, a clot completely shut
off her B/T Shunt and she was rushed to the
Catheterization Lab to have it reopened. This caused
blockage of oxygen resulting in a stroke to her left arm.
Cassandra also developed a Chylothorax and was placed on
a special protein formula. A few days later, she was
diagnosed with a resistive strand of yeast in her blood.
Because of the gortex shunt this was a major concern.
All I could do was pray. Pray that God
would bless her with whatever she needed to fight.
Finally on September 6, 1998, Cassandra
was escorted home by her daddy, mommy, grandmother and
aunt. After weeks of up and down battles, we were going
home! Before we left the hospital, she was diagnosed with
Reflux and started on medicine. I wonder from time to
time if it weren't for that condition, would her heart
defect have been diagnosed in time to save her life?
At home Cassandra did a lot of crying
and refused to eat properly. She was born in June
weighing 7 pounds, 8 ounces and came home in September
weighing 7 pounds, 11 ounces. I tracked every ounce of
formula consumed and cried when she would vomit. She
finally started to gain in November. We had a calm
winter. Cassandra started taking a vaccine to help
prevent a respiratory illness known as RSV.
On March 4, 1999, the second stage of
the Norwood Procedure (Bi-directional Glenn) was
completed. She was hospitalized for five days and
discharged on March 9, 1999. Cassandra will undergo her
final Norwood Procedure sometime between February and
June of 2000.
To look at Cassandra, you would never
believe she has a single ventricle heart. She is one year
old now, has developed beautifully, and is an otherwise
healthy, thriving baby girl. She weighs 23 pounds and is
30 inches long. She has been involved with physical
therapy for the past four months to help with the effects
of the stroke. She is doing GREAT!
Cassandra is a joy. She has a very
sweet personality. I do not know what her future holds.
When I read about other HLHS children, I am pleased to
find that they are leading close to normal lives. We were
given so much hope by all the staff at the Children's
Hospital. They are now a part of our family. Without God,
Cassandra's doctors, and all the staff's dedication I am
sure that my family would not be as complete as it is
now. God has certainly blessed our lives and hers. I
thank him every day (sometimes more than once) for these
precious gifts.
Cassandra is our HERO! She is an
amazing child, as are all children who face difficult
beginnings.
I know the diagnosis of HLHS
(Hypoplastic Left Heart Syndrome) fills you with fears
and turns your dreams into nightmares. I have experienced
the uncertainty and helplessness you feel. I hope that
someday they will have a better understanding to what
causes these defects. Until then, just look at what they
have accomplished in the past ten years. I feel very
fortunate that Cassandra was born when they now have
techniques to correct HLHS. I know it is still a risky
procedure, but I don't know how if I could have accepted
this situation had there not been something
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