Blogging Friends.... I have a question. When you hear
the word "superheroes", what immediately enters your mind? An old
eighties-version of a tight-wearing, briefs on the outside Batman? {Yes, I know
that his superhero wardrobe has evolved over the years!!} Diverse members of
Professor Xavier's X-Men? For me, two superheroes immediately enter my mind. Ready? My
first comic book love, Superman. Thanks, in vast part, to Christopher Reeve!! And,
of course, Iron Man!! He literally blasted his way into my heart thanks to
Robert Downey Jr.!! Now. I have another question. DC Comics or
Marvel set aside, what immediately enters your mind when you hear the word
"superheroes"? Me? Doctors and surgeons are superheroes. For they
save lives!! That's what being a superhero is all about. Right? Last week, I
read a special post on this Web site called TinySuperheroes about Ramsey, an
extraordinary little guy who, like me, was born with congenital diaphragmatic
hernia. I read his Mommy's Blog. TinySuperheroes is authored by Robyn, who
generously sews together capes for "special needs" children. After
reading Ramsey's post, I left a comment. I expressed that I was born with CDH as well, and thanked Robyn for raising awareness toward this life-threatening
birth defect. To my utter surprise, she replied back!! Robyn then subtly
requested that I share this TinySuperhero's story. Now, it was my turn to
reply. I asked permission from Robyn if I could post Ramsey's story--which she
had written!!--on Beautifully Unique. Robyn replied. With a definite
"yes"!! So, here it is, minus the pictures. Ramsey's story. I feel
honored beyond words to share it!! Ramsey is, indeed, a TinySuperhero!!
We were introduced to Super Ramsey by Super Case (who is really
helping us build quite the Extraordinary TinySuperhero Squad)! Super Ramsey was
born just three weeks after Super Case, and since both had immediate
complications, their moms became good friends while their babies were in the
NICU at Children's Hospital - Pittsburgh.
Before Super Ramsey was born,
he was diagnosed with CDH, or Congenital Diaphragmatic Hernia. (Not to be
confused with CHD, which is Congenital Heart Defect.) His ultrasound showed
that his stomach had herniated up into his chest, which pushed his heart aside.
At the time, it was unclear from the ultrasound how this was affecting his lung
development. Simply put, CDH is a birth defect where there is a hole in the
diaphragm (the muscle that separates the chest cavity from the abdominal
cavity). Because of this hole, some organs that should be in the abdominal
cavity move into the chest cavity. These organs then take up space that is
reserved for the heart and the lungs to grow. The survival rate of babies born
with CDH is only 50%. Survival is dependent on many factors, though largely
affected by how much the lungs were able to develop. This is a lot of
information to process before your child is even born. Ramsey's parents
gathered their support team as soon as they found out his diagnosis, and before
he was even born, thousands of people were "Rooting for Ramsey".
“Since Ramsey’s diagnosis,
I’ve become aware of the need for CDH awareness. Most people have never heard
of it, yet it happens as often as spina bifida, cystic fibrosis and congenital
muscular dystrophy. I pray that some day there may be a voice powerful enough
to inform the masses about CDH, and teams of surgeons capable to increase each
child’s chance of survival. In the meantime, I am doing my best to spread the
word about Ramsey. I hope to create awareness, and most importantly, to
increase the number of prayers that he has.” — Super Ramsey's Mom
His parents chose Ramsey
Armand as his name. Armand is this name of his grandfather, and means Strong
Soldier - something they new their son would be. Because of other
complications, they had a scheduled induction for Ramsey's birth, and chose for
Ramsey to be born on Armand's birthday, January 12th.
Super Ramsey cooperated and arrived
by C-Section on January 12, 2011. He had a big fight ahead of him if he was to
be part of the 50% that survived CDH. His initial X-Ray showed almost no lung
development, which led many to believe he wouldn't survive. Ramsey's parents
continued to support their little man by letting him fight. Because of their
decision not to give up on him, he is here today - amazingly with only asthma
and some scars as proof of his battle. When Ramsey was 1 week old, his mom
received an urgent call. She had been staying at the Ronald McDonald House
(where she met and befriended Super Case's mom) recovering from her C Section
when she wasn't next to Ramsey. Her husband called and told her to come right
away because they were going to place Ramsey on the ECMO machine. ECMO stands
for Extracorporeal Membrane Oxygenation and is the last thing any parent wants
associated with their baby. ECMO is used as a last resort - it's a form of life
support for infants, and works as a heart/lung bypass. Ramsey's oxygen sats
were down to 30 (expected to be anywhere from 70-100). They were manually
giving him oxygen. Ramsey's mom arrived, wrapped her arms around him and kissed
him on the forehead while he lay preparing for the surgical procedure. Almost
instantly (no exaggeration) Ramsey's sats rose to 80! He remained stable, and
avoided the ECMO altogether! What a miraculous moment it must have been for
them to literally see their child regain life. A strong soldier and
TinySuperhero indeed…and quite a magical mom to top it off! Super Ramsey spent
4 weeks on a ventilator and 8 weeks in the NICU. He was able to undergo surgery
to repair the hernia, and his lungs looked good after all. The doctors didn't
think that Super Ramsey would survive. Today, Ramsey is 2 years old and
thriving! It's really powerful to look at Super Ramsey and think that his
chances at survival started at 50% and were even lower in his first week. Now,
this TinySuperhero lets nothing stop him and his TinySuperhero power of
strength that saved him will surely help many others as well! While he was
fighting, he had a whole team "Rooting" for him. Now, Ramsey and all
of his helpers are rooting for others! He is already a picture of hope in the
CDH community, and we hope his story can reach other families who are fighting the
same battle.