Family Story Assets (Word Document, Photos)
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In June of
2008, the day after celebrating our 2nd anniversary, we welcomed our
first little girl, Emma Cathryn. She was perfect in every way, and we were beyond
thrilled to be parents! As we watched
her smile for the first time, laugh for the first time, learn to crawl, walk
and talk, we quickly realized we wanted more of the same joy she brought into
our lives. Four years later Ellie Cate
was born. It was a perfect pregnancy, she looked perfect, there were no
complications, and no warnings for the heartbreaking journey our family was
about to face.
We were
getting ready to take Ellie home from the hospital at 2 days old, and our Pediatrician,
Dr. Guetersloh, came to check on us. She said that Ellie looked great, but that
she “heard something” that she wanted to have checked. Seven days later we met
with a cardiologist for a follow up, and after 3 hours of testing we heard the
devastating words that no parent every wants to hear… “your daughter has a
heart defect, and there is no way around it, she will have to have open heart
surgery”…followed by a ton of tears, confusion, and sheer terror.
With no
outside symptoms, or warnings signs, Ellie was diagnosed with Transitional AV
Canal, which means the part of the heart that separates the two upper chambers
did not form, and the two chambers were acting as one. This also meant that as
she grows older the blood would not supply sufficient oxygen to her organs.
Open Heart Surgery was the only way to fix our sweet little Ellie. They wanted
her to be a little older, so that her heart was bigger, and wanted to get past
flu and RSV season before having surgery. So for 12 months, we waited, we researched,
we prayed and we cried a lot. There wasn’t a night that went by that I didn’t
hold Ellie all night long, or have my hand on her chest or back at all times,
making sure her little heart was still beating.
At 14 months
old, we handed Ellie over to Dr. Forbess’ team, and watched her gently wave
goodbye to us as they carried her down the hallway. She was in surgery for a
total of 4 hours, 35 minutes of that her heart was stopped and she was placed
on the heart and lung bypass machine. We received hourly updates, but nothing
was better than that final call that said she “was a little rockstar”! What a
little miracle she was! We went home, and you would never have known she had
just been through open heart surgery…life was back to normal…except for the
part where we had to stay away from everyone for fear of her getting sick. No family
vacations, no large family gatherings for holidays, but it was all worth it for
her health. I felt like I could breathe for the first time in over a year.
At her sixth
month post op she received a fantastic report. Her heart looked great, we could
get out again, and go places without too much fear. We were all overjoyed! At
that checkup, we told the team that we had always wanted a large family, but
worried about the possibility of having to go through this again. They assured
us that Ellie’s heart defect was not genetic or hereditary, but rather it was
something that “just happens” sometimes, “like a lightning strike”. They also
stated that it was very rare, less than a 2% chance that it would happen
again….we promised each other that day, to trust in God and not to live in
fear. Two months later, we announced we were expecting our 3rd baby.
Life was exciting, the pregnancy again was easy, and we could not wait to have
another baby.
Around 5
months, we decided to have a fetal echo, “just to make sure”. After about 45
minutes, we both could tell something was wrong…I honestly do not remember the
next three days, how we got home from Dallas, or what the doctors told us, but
our 3rd baby girl was going to be born with a heart defect that
would need open heart surgery as well.
A completely different defect called
Transposition of the Great Arteries. The two main arteries in the heart that
were supposed to cross to transport blood from one side of the heart to the
other, did not cross. Elizabeth’s organs would not get any oxygen without this
surgery.
2 little
girls with open heart surgery 15 months apart! Right then I knew what it felt
like to be happy and heartbroken at the exact same time. Again, I cried, I
blamed myself, and I often asked “why me?”
Elizabeth’s
defect was a little more severe, but also one that could be fixed. So on
October 1st, 2014 I moved to Dallas, 8 days later Elizabeth made her
debut. She too looked amazing! The third Lane girl born with a head full of
thick brown hair just like Chris. The staff at UTSW put her on life support,
and she and Chris took the quick ambulance ride down the street to Children’s.
At six days old, and 5 pounds 10 ounces, she went into surgery. The entire
surgery lasted around 10 hours, 4 of which her heart was stopped and she was
placed on heart and lung bypass machine. We spent the next 20 days in the exact
same CICU room and another 10 on the regular floor. Chris was flying back and
forth from Lubbock to Dallas, trying to keep Emma and Ellie’s routine going as best
we could. After a very long and lonely month, it was time to go home! I missed
Chris, and the big girls. I just wanted our family of five together, and it was
the best reunion ever. Our family was happy, healthy, and complete!
I mentioned
that I often wondered “why me,” but I now know why. 1 in 100 babies are born
with heart defects, there is no rhyme or reason, it just happens, and many go
undetected even after birth, until it is too late. Like us, many families know
nothing about Congenital Heart Defects before being thrown into this world. It
is our goal that our story can give comfort and hope to many other families
along the way.
We thank you
from the bottom of our hearts for coming tonight, and for supporting the March
of Dimes. You are the reason our babies were given a fighting chance. You are
the reason families like us have hope for the future. Thank you for opening
your hearts tonight and helping the March of Dimes continue its research for
babies just like Ellie and Elizabeth. We have faith that one day families will not
have to go through the heartbreak that is CHD, but until then, we will continue
to give families hope for a future.
