Monday, April 15, 2013

Superheroes


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.

 

 

8 comments:

Lisa Razza said...

Thanks for sharing Ramsey's story! You're both super!

Raelyn said...

Lisa....
Thank-you for the comment!! I truly appreciated it!! ;)
And, you're welcome for sharing Ramsey's story!! ;op

chicamom85 said...

What a beautiful story! Thank you, it is inspiring.

Anne and Sasha

Raelyn said...

Anne and Sasha....
Thank-you for the comment!!
It IS inspiring!! I concur!! That Ramsey is a Superhero Warrior!! ;op

Dip-Dip and the Bridge said...

That is a lovely story Raelyn. It is amazing how we fight against all the odds to survive - very inspiring!
Lynne x

Molly The Wally said...

What a great story. We wish Ramsey all the best for the future. Have a terrific Tuesday.
Best wishes Molly
PS our super hero is Batman and Mollys' super anti-hero is Secret Squirrel!

Raelyn said...

Lynne....
Thank-you for the comment!!
It IS inspiring!! I concur!! That Ramsey is a Superhero Warrior!! ;op

Raelyn said...

Molly....
Thank-you for the comment!!
Your favorite superhero is Batman? Interestingly enough, I grew up on DC Comics. Superman. Wonder Woman. Batman and Robin. But now, as an adult, I prefer Marvel!! {Nothing against DC!! I refuse to take sides!!} Iron Man. The X-Men. Spiderman. They are all Marvel!! Go figure!! ;)
Secret Squirrel?! We have some of those around here!! They must work in mobs all around the world!! Crack. Me. Up!! ;-D
PS. I also love bad guys, but never root for them to win!! ;op