By Ann Yurcek
From the very earliest of
moments with my daughter Becca, her heart was “at the heart” of her issues.
When she was just two-days-old,
a knock on the front door with a police officer informing us to call the
hospital signaled the pounding and terror of my heart. As I raced up the
steps, barely touching any, grabbing the phone I called the number on the piece
of paper handed to me by the police officer. The first words from the nurse were,
"She is alive . . . but her heart is causing issues and she is being
airlifted to the Children's Hospital of St. Paul". Thus began our “Journey
of the Heart”.
Doctors found out that
Becca's heart had Pulmonary Valve Stenosis, and a huge ASD (early on she had
only a little thickening from Hypertrophic Cardiomyopathy). From August
to October, her stay in the NICU was marked by figuring out all the other
things wrong with tiny Becca. They felt she had some unusual form of Noonan
Syndrome because she was just too severe. Her immune problems, her high white blood
counts, her constant thrush and staph infections puzzled the best professionals.
At nearly 3 months, they had
placed her gastrostomy, repaired her malrotated intestines and with a shot of
Fentanyl for the pain Becca went into respiratory and cardiac arrest. For
13 minutes, tiny Becca's heart was not beating. Seeing my daughter in deep
shades of blue, I ran from the NICU, ran from the trauma and only adept nurses
would corner me into reality and calm my racing heart. The doctors came to me saying,
“We were able to restart her heart, but we do not know how much brain damage
she suffered, only time will tell”.
The NICU staff were talking
about discharge by the end of October; however, I was seeing something in
Becca. I told them of my concern and the staff told me that it was probably
fear of bringing Becca home. The panic caused my heart to race. Maybe they were
right, I was afraid of the responsibility, I was afraid of the future, and of my
life racing seriously out of control. On Halloween, Becca played tricks
on her staff with her heart and soon the Pediatric Cardiologist was called back
in. They came to me with the news that Becca's heart was worsening. I was not
just a panicking mother, I knew in my heart that something was wrong; her
spark, her eyes told me. My mother’s intuition was right and thus began my
own struggle with that intuition and not wanting to see anything more wrong
with my tiny daughter.
With Hypertrophic
Cardiomyopathy, Pulmonary Stenosis, an ASD and all the other things wrong with
Tiny Becca, I knew that my daughter was really sick. They started Lasix to
relieve the fluid that was filling in her tiny body. She was in the beginnings
of Congestive Heart Failure. Heart failure . . . caused this Mom's heart
to worry.
Thanksgiving arrived and the
hospital sent our tiny daughter home to make memories . . . Because they didn't
know how long Becca would live. They were always honest about her poor
prognosis. But for us, we learned to accept that every day with Becca was gift.
Time home would be limited, and I learned very quickly that I could not do this
alone. I had a critically ill baby and five other children under of 11. I had
to learn to accept help and open my heart to sharing our struggles and journey
with those in the power to make decisions and find resources.
Christmas came and went, and
the miracles of the season changed our hearts and gave us HOPE. (Read the Christmas Story here) Becca's heart was in serious trouble and by February, we
were given a two-day pass home before her heart catherization. I sat with Mary
the social worker and realized that Becca's six-month-old birthday was on
the third and it may be the only birthday we would ever be able to celebrate. I
had few memories, we had few moments of home and we needed a celebration.
My camera had been stolen and the only pictures we had were snapped by the
staff of the NICU. Mary had me call Make-A-Wish and I told them of our
wish to borrow a video camera so we could record memories of my dying baby.
Make-a-wish requires a wish
to be that of a child, not of the family. Becca would never live to be old
enough to get a wish of her own. I thanked them and went on to planning a
special Heart Party for Becca. (Read the Valentines Story here ). The house was decorated in hearts of all colors, friends,
family and others all arrived and that evening would be documented as a camera
crew surprised us and showed up at the house to record Becca's party of the heart.
We were not alone in our journey, Becca moved many people’s hearts.
The next day, we were off to
the hospital for her cardiac catherization, as I ran the stairways of the
hospital to relieve the stress of waiting my heart raced. As my heart raced, in
the cath lab she heart scared the doctors with going into Ventricular
tachycardia. It was too close. But Becca hung on but the news was
not good. They couldn't balloon the valve and her heart was thickening even
more. They told us that she would be ineligible for a heart transplant due to
her immune and hematologic status, but they would present her case to a team of
Cardiologists and see what they. That February was a month of waiting for
news for Becca's heart.
The team decided to try to
fix the parts of her heart they could and see if that would buy her more time.
But it was risky with her severe biventricular hypertrophic
cardiomyopathy. The day before the surgery would arrive and so would her
exposure to Chicken pox. Ian had broke out and the phone call to the doctors
would push the surgery back. Her heart was pounding so badly that her tiny
chest shook from the force.
No stethoscope needed to
count her heart rate. Becca was blue, often on oxygen, and she was having
spells of oxygen not reaching her brain. They thought the pulmonary valve was intermittently
clamping down leaving her for a few seconds with eyes rolling back into her
head.
March 27, 1990 Becca faced
open heart surgery and our church had people signed up to pray in 15 minute
spots around the clock for the day of her surgery and the days that followed.
We knew that she may not survive the operation, but we no choice but this last
ditch effort to save our dying baby.
Seeing her after the surgery
was awful as she was swollen and she was clearly not doing well. A high fever
signaled a staph infection, her chest had filled in with lymph which tests
later revealed her immune system was non-existent. Slowly, with prayers,
Becca's status improved. One day I arrived in the Pediatric Intensive care unit
to see her up and out of bed in a baby swing dressed in little angel heart
pajamas. My daughter's heart was mending.
Time would heal the repairs
on her heart, and within months Becca would have new strength. By her first
birthday she sat up for the very first time and she would no longer be blue
when we tried to give her a bath. Time on oxygen was limited and with being on
IVIG (to boost her immune system) Becca was beginning to thrive.
Equipment and 24 hour staffing arrived in our home, and some days it was a
full-time job for the nurse and I to manage her complex care. But I didn't care because my daughter was
still here.
I would put my hand on her
tiny chest and marvel at how quiet her heart was now. The hypertrophic cardiomyopathy was still a
concern, but for today my daughter's heart was quietly beating in her chest.
Every visit to the
Cardiologist would send my heart into panic. At first, every time I would go,
it was always more news that things were deteriorating. However, as time
would move on, the visits caused less panic and her heart became more stable.
No more congestive heart failure.
As time wore on, the visits
revealed a lessening of the thickening in the walls of her heart. By age 7 the
Pediatric Cardiologist told me that they could see no residual Hypertrophic
Cardiomyopathy. After the visit I stood on the top of the parking garage
looking up over downtown, looking at the blue sky with scattered clouds while
my heart soared, I yelled out at the top of my lungs,“Thank you for the miracle”.
Becca’s heart can scare her
and medications have caused her heart to race. A third degree heart block at
age nine caused her heart to scare us again.
However, at age twenty-one an atrial fibulation, found during a visit to
the Adult Congenital Heart Defect Clinic, would give us news from the Cardiac
MRI that her heart was functioning much better than they originally thought.
Now we just wait, continue to follow-up and pray for Becca’s heart.
Hearts .... Valentines
Day... Congenital Heart Awareness Day, Heart Month, Noonan Syndrome Awareness
Month. Only appropriate.
For Becca we got a miracle
and we know that every day with Becca a miraculous gift. A confirmation that resonated with me after
listening to the RASopathies Foundation’s webinar, presented by Dr. Gelb, last
night about the prognoses of some of the sickest wee ones with Noonan Syndrome.
(Click Here To See This Webinar: http://www.youtube.com/watch?v=g6mJ9nnD2pg)
I am honored to be involved
with the RASopathies Foundation and we pray that doctors will learn more to
help those with Noonan Syndrome and other RASopathies.
About Ann: Ann is the author of the book Tiny Titan
which you can purchase at the RASopathies Foundation’s online store www.shopteamras.com. Proceeds go to the
RASopathies Foundation for research and/or educational services. For more information on the RASopathies,
please visit www.teamrasopathies.org
or for more information on Noonan syndrome, please visit www.teamnoonan.org. To become a guest writer, please email info@teamrasopathies.org.
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