In
Memory of Elaine Andrew
When
we were six months pregnant we had a routine ultrasound at our
doctor’s office. They technician wasn’t able to get a good look
at the baby’s heart, but could see that it had four chambers.
During the ultrasound the technician thought that there may be a
problem with the baby’s bowel because it looked like it was denser
than it was supposed to be. The doctor wasn’t too concerned, but
sent us to see a perinatologist (specialist) at the hospital just to
be on the safe side. They were supposed to check out the baby’s
intestines and also try and get a closer look at the heart since the
baby hadn’t been cooperating that day. Needless to say there was
absolutely nothing wrong with her bowel. It ended up being a faulty
monitor that caused the discoloration, but the specialist did get a
closer look at the baby’s heart. We were moved into another room
with better equipment so they could get a better look at was going
on. The doctor told us he was afraid that our baby had something
wrong with her heart. The right ventricle was less than half the size
that it needed to be, and there wasn’t any sign of a pulmonary valve.
When
we heard this, our stomachs fell through the floor. It is such a
shock when you first hear that your baby has a severe heart defect.
We immediately had an appointment made for the next evening to be
seen by a pediatric cardiologist at Primary Children’s Medical
Center in Salt Lake City. We were still in shock when we went to see
Dr. Luciana Young. After a fairly long and stressful ultrasound, Dr.
Young came and talked to us about what they thought was going on with
this baby’s heart. It was confusing, and very frightening. We told
our families, and they were very supportive.
All
of the doctors and nurses that we saw were helpful and informative.
Our questions were answered as we tried to research about HRHS, PA
and the different surgeries that she would have to endure throughout
her life time. We also talked a lot to the baby’s maternal
grandmother, who was also born with a CHD. She helped us understand
what to expect and helped us to be more at peace with the situation.
We were shooting for a natural birth and had checkups regularly with
the specialist. At a checkup at 38 weeks, the ultrasound indicated
that the baby had stopped growing and was only about 4 lbs. An
amniocentesis was preformed to check the status of the baby's lungs
to see if it was possible for the baby to be born early. We waited at
home for the results and got a phone call to pack up and be in Salt
Lake as soon as possible, because the baby’s lungs were developed
enough to be born and since she wasn’t thriving in the womb, she
needed to be delivered cesarean.
It
was a long wait once we got to the hospital, but on April 20th 2001,
after a long, stressful day, our daughter Elaine Ruth was born at
10:39 pm at the University of Utah Hospital. She was 6 lbs. 1 oz. and
18 inches long. She was immediately whisked away to PCMC, but not
before the Life Flight crew stopped in briefly at mom’s recovery
room so she could hold her precious baby. It was an emotional moment.
The doctors had been accurate in their assessment of her problems. On
top of what they had seen, her coronary artery was about twice as
large as it was supposed to be because her body had grown a massive
amount of collateral veins from her right ventricle into her
coronaries. The blood needed a place to go and the extra blood flow
caused this abnormality. This added some danger in keeping the
pressures in her heart where they were supposed to be.
Elaine
spent 5 days in the NICU. These were probably the hardest days.
Everything was new and intimidating. The meds that she was on to keep
her PDA open caused her breathing too slow. She would often stop
breathing. This was very frightening, to watch as the nurses would
help her begin breathing again, and again. Eventually she was placed
on a ventilator. She then had a central B-T shunt placed in her. The
surgery had to be preformed twice because the first shunt clotted
off. She was reopened and a new shunt put in. This was done by Dr.
Gregory DiRusso. She then remained in the PICU for about 2 weeks. She
did well. When Elaine went home at 3 weeks old she was on oxygen, Coumadin, Captopril and a variety of other meds. Mom had to learn to
insert an ng tube for feeding, but never had to use her skills, thank
goodness.
Elaine
was small, but did very well recovering from her ordeal. She was off
oxygen at 2½ months. She then had her Glenn done by Dr. John
Hawkins, in October of 2001 at 5½ months old. She was in the
hospital only 5 days! She was such a cute girl and learned everything
so fast. She took a little longer than usual to roll over, crawl and
walk, but that it to be expected. She had a large lump on her chest
that we were told was her xiphoid process (a triangular bone), which
stuck out instead of laying flat like it is supposed to. When this
happy, loving girl had her Fontan three days after her 2nd birthday,
we found out that it was actually one of the wires holding her
sternum that had come loose and was poking her. Since it was so
painful, her body had grown a cyst around it to protect itself. It
was removed during the Fontan.
Elaine’s
Fontan came earlier in her life than had been anticipated. Her heart
function began to slow and SAT’s were dropping. Her Fontan went
ok. She ended up staying in the hospital much longer than expected
because she contracted RSV while at the hospital. This made recovery
very difficult. She had a difficult time getting her pressures up in
her heart, it take a while for the body to adjust. She had a real
hard time keeping meds and food down. She had a lot of drainage from
her right chest tube. Her baby sister Violet was only 2 months old
during this stay at the hospital, so the room was very crowded.
After
her Fonatan she had a leaky mitral valve which we thought may require
repair, but not likely in the near future. After that we played the
waiting game. until the left side of her heart would wear out and she
required a transplant. Doctors guessed that this wouldn’t be
necessary until she was an adult. During the next year we were able
to do a lot of fun things with Elaine. She loved Buzz Lightyear from
Toy Story and the Wiggles. She would dance and sing. She really
liked Snow White and playing dress up’s. We were able to have a
video camera to record a lot of her. She was so happy and
compassionate.
Even
after all that Elaine had been through she was a joy to be around.
She still had memories of her last surgery, but they didn’t
frighten her. She loved her doctors! We know that she was looked
after by people who love her, and we are so thankful to have had her
in our lives. She loved to color, sing, play outside and climb on
everything. Besides the fact that she was small for her age (baby
sister shared the same size diapers), no one could tell she had such
a problem. She had a lot of fun with her baby sister Violet (who
has nothing wrong with her heart) and eating pudding!
In
February of 2004 Elaine began to show signs of heart failure. She was
taken to the Pediatrician and told it was a cold and prescribed cough
medicine. When things got worse the E. R. said she may be coming
down with an ear infection. In reality she was in extreme heart
failure. She was admitted to Primary Children's Hospital on the 15th
of March. She was soon placed on the transplant list for a heart. She
remained in the ICU for the last 5 weeks of her life. As she began
growing worse she refused to eat and different organs began shutting
down. It is the hardest thing to see your child suffering beyond all
comprehension, and know that there is nothing you can do to ease that
pain. Elaine tried to remain happy and would still smile for us,
even at the end. Eventually she got an infection in her blood
stream. Most likely a result of all the PICC lines, IV’s and tubes
she had running through her body. The infection ruled out the option
of ECMO. They could treat her infection, but knew she wouldn’t
live through it without a new heart. The infection also made her not
eligible for a transplant and was taken of the list. One of the
hardest things was that Elaine was on so many meds and liquid food
that her volume intake was so much greater than what she put out.
Her kidneys weren’t working. She was only allowed 2 Tablespoons of
water every 2 hours. Her mouth was so dry and chapped lips that were
cracked and bleeding. Ice water was her all time favorite drink, and
we couldn’t just let her have what she wanted so she could be a
little happy.
Unfortunately
Elaine did not receive a new heart. There weren’t any other
options for her at the time. The Pediatric LVAD (Left ventricular
assist devise) had not been approved/developed for infants and
children. She may have been able to hold out had she had other
options. Elaine had many problems while in the hospital. We watched
her be intubated one last time, injected with all kinds of drugs to
keep her heart beating. After five weeks in the ICU, there was
nothing more to be done. She passed on April 19th, 2004, one day
before her third birthday, in the loving arms of her Father, holding
her mother’s hand. She was not conscience when she passed. We
like to think that she merely woke up in a different place that
night.
It
is still unknown as to why she went into heart failure and why it was
so rapid. We miss our darling daughter very much, but are comforted
by the knowledge that we will see her again. She will be in our
thoughts everyday until that day. She was so brave and strived to be
pleasant while she felt so terrible. We are thankful for everyday we
had her in our lives, and for the great lessons she taught us. Death
is not the end, but merely a step towards everlasting happiness.
A
heart child comes with stress, problems, meds and all kind of things
you never knew existed, but along with all that is the love and
tenderness that is so abundant with that child. We are thankful and
blessed to have had Elaine in our lives, even for such a short time.
We love to talk and laugh about her, and remember her smiling face.
It
has been almost 10 years since Elaine’s death. Sometimes it feels
like yesterday, but most of the time it feels as though it has been
an eternity already. Her sister Violet is heart healthy, and she now
has a little brother, Ashton, who is also heart healthy and another
sister Myra who is heart healthy, and a second heart healthy brother,
Vaughn. Our greatest concern is that more isn’t being done to
raise awareness about CHD’s. It is a real thing that people
struggle and live with everyday. We want people to know what to look
for, have babies adequately tested when they are born, and have
medicine advance so the heart kids are given more of a fighting
chance. Please know that we promote awareness for others, for the
increase in knowledge and the benefit of human life.
Darin & Melissa Andrew
(Written in 2007 in an effort to help
raise CHD awareness)
Revised 2009, 2011, 2014
In reading this story about Angel Elaine, I came to realize, once again, how each of us has a mission in this life. I believe that for Elaine and her family, it is to raise awareness about Congenital Heart Defects.
My name is Jenny McKinney. No other words are needed this day except- how blessed heaven is to have this Angel Girl.
