Aidan was born on August 18th, 2004, with an
undetected heart defect. He was our first born, a beautiful and what we
thought, healthy baby boy. At the hospital my husband and I had some
concerns about Aidan and questioned; his non eating habit, color and
coldness of skin. We were told of a murmur they heard and that they would
watch it. We were ignored, blown off and treated as new and over-protective
parents. Trusting the professionals, we took Aidan home.
Three hours after discharge is when our lives changed forever! Aidan woke up
crying hysterically, as a first time mom, I tried comforting him, changing
his diaper and feeding him. After a few more attempts and nothing calming
him, I called my mom. I began telling her that I thought Aidan was allergic
to his formula or something, for I could hear gurgling. My mom asked, "Is
that Aidan breathing?" I said, "Yes" and she yelled, "I’m on my way". I
screamed to my husband who was napping, that something was wrong with Aidan!
Within minutes Aidan’s coloring became flush and he had red streaks all over
his body. As we were walking out the door to take him to the hospital, my
mom was pulling up and together we took Aidan to the emergency room. After
four and a half hours of numerous tests, lab work and pokes they still did
not know what was wrong with our baby. The doctor then called the nearest
hospital with a Neonatal Unit and it was that doctor who diagnosed our sons’
heart defect over the phone and immediately sent his transport team and
medicine Aidan needed to stay alive.
Upon arrival at the second hospital we meet with the cardiologist and were
told that Aidan had been "REVIVED" during transport, that he was very, very
sick and of his heart defect; Hypoplastic Left Heart Syndrome (HLHS). HLHS
is one of the most complex and severe cardiac defects and remains the most
challenging to manage of all congenital heart defects (CHDs). Aidan was born
with "half a heart" for his left side (the pumping chamber) was so severely
underdeveloped, resulting in a situation where the left side of the heart is
completely unable to support the circulation needed by the body’s organs. If
he was a candidate, he would undergo a series of 3 open heart surgeries
before the age of three and or need a heart transplant. We were devastated!
Forty-five minutes later we were allowed to see Aidan, a sight forever
etched in our minds. Our precious baby had so many wires and tubes attached
to him, so many lights, monitors, nurses and doctor’s surrounding him. Our
priest came and Baptized Aidan and Anointed him of the Sick, then he was
transported to a third hospital. Aidan was transported to Children’s
Hospital of Michigan where they were equipped to care for him and his
"special" heart. After a week and a half of uncertainty, things began
looking better. Aidan’s test results were coming back positive and he soon
became a candidate for the surgery. The 1st surgery, the Norwood procedure,
was performed on September 1st, 2004. Thankfully and Lord willing, he was
home 2 weeks later. Aidan came home with a feeding tube which he only needed
a week, also with oxygen which continued until after his second surgery.
Aidan remained homebound, only leaving the house for doctor appointments
until after the second surgery due to the high risk of infection.
Aidan had the 2nd surgery, the Hemi-Fontan procedure, done at ten months of
age (normally done between 4-6 moths of age) due to some wheezing and
congestion. The Hemi-Fontan was performed on June 16th, 2005. Again
thankfully and Lord willing, he was home 6 days later. Aidan no longer
needed the extra oxygen! After a 6 week recovery, all restrictions were
lifted and Aidan was allowed out into the "WORLD". The 3rd and we pray,
final surgery, the Fontan procedure, was performed on June 27th, 2006. Once
again Thankfully and Lord willing, he was home 13 days later.
Aidan is a thriving, fun, energetic little boy, who loves life and everyone
around him. He has the biggest, brightest brown eyes and a smile that will
light up any room. Through Aidan’s eyes and heart, we have learned how
precious life is; we’ve learned to love more, give more, be more patient and
are definitely more faithful. We live one day at a time and do NOT take
anything for granted. Simply put, we have become better people! Although we
would never wish this journey on anyone we do NOT regret the lessons
instilled within us. As proud, honored, dedicated and determined parents of
a child with a heart defect, it is our responsibility to do whatever we can
in fighting for the cause. It is very important to our family that we tell
the world about Aidan, our "MIRACLE", hoping to raise awareness about
congenital heart defects. Raising awareness is important on many levels-it
will provide hope for families of CHD survivors and comfort to those whose
loved ones have lost their battles; it will inform the public about symptoms
of CHDs and possibly save lives. Aidan showed several symptoms of having a
cardiac problem and his little body was going into shock before being
discharged from the hospital.
HLHS is not correctable but can be treated with the series of three
reconstructive surgeries or heart transplantation. The surgeries have been
around for about 26 years or so and with medical technologies and
advancements improving every day, that alone gives Aidan, his heart buddies
and us; HOPE. Aidan will require lifelong follow-ups by his cardiologist,
will require some heart medications, may also be at risk for an infection on
the hearts valves (endocarditis) and will have to take an antibiotic such as
amoxicillin before having any dental work done and certain surgeries to
prevent endocarditis. Aidan will never participate in any physical contact
sports; will always have to be careful of hard blows to his chest and be
more careful throughout the winter months of simple illnesses such as the
common cold or flu, for it could hospitalize him, causing more work on his
heart. We wash our hands a lot more and use a lot of hand sanitizer as
preventative measures! Overall, it is expected that children with HLHS, will
have a good quality of life: have friends, play, and go on just like other
children.
My husband and I were again blessed last September 30th, 2005 with our
second baby, a beautiful and this time, healthy baby boy we named Gabriel.
First and foremost, thank you God for blessing us with your gifts. Many
thanks to our family; friends, co-workers and to all the heart families who
have shown us so much love and support. We love you all and appreciate all
you do for us. To all the wonderful doctors, Specialists, nurses and Staff
who care for Aidan, Thank you. We hold each of you in our hearts for you’re
such a part of our family and our lives. Thank you for taking such great
care of Aidan with your love, care, concern and most importantly, your
knowledge and wisdom.
Aidan, we love you and are so very proud of you, always be strong, fight
hard and never give up.
I invite everyone to visit the Hearts of Hope website
www.heartsofhopemi.org. A non-profit organization located in the Metro
Detroit area, whose mission is to provide support, hope, resources and
networking to families affected by CHDs.
Abilities:
See: Yes. Hear: Yes. Talk: Yes, learning more words daily! Walk: Yes. Read: Not yet. Use hands: Yes.
Siblings:
brother Gabriel, age 2
Child's Interests:
Aidan loves playing with cars, watching for airplanes and watching his train
go around and around. He loves books and is learning how to color. He likes
watching Little Einstein's, Mickey Mouse Clubhouse, Handy Manny, Elmo, Nemo,
Monsters INC, Disney's Cars, The Upside Down Show, Blue's Clues, etc. Aidan
enjoys being outside.. some favorites are going for walks, blowing bubbles,
swimming and swinging. Aidan is a very loving boy who's always giving out
hugs and kisses, high fives and knuckles....... even to strangers! When
Aidan was a baby I took an infant massage class with him so he likes his
hands, head, belly and especially his "BOO-BOO" rubbed. He will lay there
for hours and if you stop and he wants more he'll wave his hand in your face
or wiggle his body until you continue!
Sibling's Interests:
Gabriel enjoys many of the same things as his big brother... Cars, trains,
ride on toys, books, blocks and biting the tips off crayons! Gabe loves
being outside too going for walks, blowing bubbles, swimming and
swinging so we're looking forward to the warmer weather here in Michigan.
Gabriel can talk very well and has been walking since before his 1st
birthday, runs and climbs on everything. Gabriel is the "monkey" and
teaches his "BIG" brother lots of bad habits I.E.; standing on
tables/chairs, furniture and toy boxes.
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