Friday, May 10, 2013

Raising Awareness


Question. Is it egotistical for somebody such as myself to raise awareness for her own birth defect? {That would be congenital diaphragmatic hernia. Although I was also born with craniosynostosis, and Wolff-Parkinson White syndrome, both which were surgically repaired!!} Is it egotistical when so many children are still dying--50%--from C.D.H., and you want so desperately to do something about that? Is it? I oft wonder this. But then I am reminded of Killian. Whitney. Timoteo. Wyatt. Ramsey. Ava. Catherine. Parker. Clara. Jude. Clay. Memphis. Sunni. Lincoln. Bonnie. Atiksh. Camden. Oliver. Jim. Claire. My goodness, have I "met" so many Fellow Kindred Spirit C.D.H. Friends through this wonderful world of Blogging!! And I wish to raise awareness for them. It is not about me. I'm just another survivor. Am I aware of the fragility of life? Yes. Am I aware that any one of these children's very oxygen can be sucked away from them? Yes. Which is why I pray hard that these children grow and develop into adults. Like me. Because these children have something in common. They are hard to kill!! And, while reading one of my new favorite Web sites, TinySuperheroes, this morning, I "met" for the very first time yet another Fellow Kindred Spirit C.D.H. Friend, an incredible little girl, whose name befittingly means "life". Zoe. Her Mom granted me permission to share Zoe's story off of TinySuperheroes. No C.D.H. experience is exactly the same. They are like a zebra's stripe pattern, these children!!
“Her zest for life is mesmerizing and her joy is so rewarding. She never ceases to amaze me.” — Super Zoe's Mom
We're very excited to introduce you to Super Zoe (she is one of my new best friends)! We couldn't be happier that TinySuperheroes is reaching and empowering children all over the world, but it's always exciting when we're introduced to one closer to home so that we can meet and personally deliver their cape! When Super Zoe was nominated as a TinySuperhero, and I saw she lived just a ferry ride away, I knew she and I were going to be friends! We made her TinySuperhero cape yellow and blue to match the dress of her favorite Disney princess, Belle (who she recently met in Disney Land)! Super Zoe is indeed a TinySuperhero, and also a miracle whose resilience has surprised even optimistic doctors! Super Zoe's fight started before she was even born. While her parents awaited her due date, they knew Zoe would be born with a condition that gave her only a 50% chance of survival. Zoe was born with CDH (Congenital Diaphragmatic Hernia). You may remember Super Ramsey who is also thriving after his CDH diagnosis. CDH is a birth defect that is often detected in utero, where a hole exists 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% and is dependent on many factors, though largely affected by how much the lungs were able to develop. Super Zoe revealed herself as a TinySuperhero on August 12, 2008. They weren't sure of Zoe's lung development when she was born, so she was placed on the ECMO machine, which would breathe and oxygenate for her so her lungs could rest until they knew more. CDH requires surgery to place the organs in their intended locations. Zoe remained on bypass machines and ventilators until she was 1 month old, at which point they performed surgery to correct her CDH. During surgery, they discovered that she had just 2/3 of a lung on her left side, because it had been compressed by other organs during development. Her parents were able to hold her for the first time just 2 days before this surgery! "It was the most amazing thing ever." Zoe finally went home in November, over 2 months after she was born. In the months and years that followed her homecoming, Zoe has been on Oxygen, had a central line for medicine, a pulse oxometer to watch her oxygen levels, CPAP, NG feeding tube, then a G Tube … life for this precious girl and her amazing parents hasn't been easy. Today, Super Zoe still deals with medical complications. Primarily, Zoe suffers from severe pulmonary hypertension. Pulmonary hypertension is abnormally high blood pressure. Because of it, Zoe is on a 24/7 IV medication that she receives through a central line as well as a number of other medications. Zoe also has a ASD and a VSD. Atrial Septal Defect (ASD) is a form of congenital heart defect that enables blood to flow between the left and right atria. Ventricular Septal Defect (ASD) affects the wall that divides the left and right ventricles of the heart. These heart defects will need to be closed through surgery in the future. Zoe is so strong. These medications are really helping her now, but a lung and/or heart transplant could be in Zoe's future. Along with medications, Zoe is on oxygen at night, goes to physical therapy, occupational therapy, and speech therapy. Those are the medical obstacles that Super Zoe overcomes daily, but let me tell you about the love contained in this Extraordinary TinySuperhero. When I met her to deliver her cape, she was shy at first. It probably didn't help that I woke her up from her nap! About 20 minutes into our visit, I heard her precious giggle...and we bonded! So, when I had the opportunity last weekend to spend time with her again, I jumped at the chance! We picked up right where we left off! She came to our sewing day to help us make capes for other TinySuperheroes! She even helped me unload the fabric from my car! The most beautiful moment I had that day was when Super Gabby arrived! Neither Zoe or I had ever met Super Gabby. We were both super excited to see such an incredible member of our Extraordinary TinySuperhero Squad! It was a beautiful day outside. The three of us were talking, and Zoe told me that Gabby's arms were cold. Zoe then proceeded to rub her hands up and down Gabby's arms to warm them up. It was the most simple, pure act of love - and it is reasons like this that I'm the luckiest person in the world to be surrounded by the Extraordinary TinySuperhero Squad. This is just the beginning of my friendship with Super Zoe, but if you'd like to continue to follow her, you can at her blog: zoehenry.com.
I pray that Zoe's health improves, and for continued progress, plus many milestones reached!!
 

8 comments:

finnhoward said...

Oh little Zoe. Thank you for making us Ware of her story!

Molly The Wally said...

What wonderful little folk. We hope they all grow up and keep fighting and remain strong. Have a super 'tinysuperhero' Saturday.
Best wishes Molly

Raelyn said...

Finn....
Thank-you for the comment!!
Your welcome!! It was my pleasure!! ;op

Raelyn said...

Molly....
Thank-you for the comment!!
"What wonderful little folk. We hope they all grow up and keep fighting and remain strong.". Hear, hear!! ;op

Dip-Dip and the Bridge said...

I think it is fantastic for people to be made aware of things they would perhaps not know ordinarily. My hubby has bone marrow cancer and sometimes I am convinced people think he walks strangely because he is drunk. Knowledge can only bring good results.
Lynne x

Raelyn said...

Lynne....
Thank-you for the comment!! I truly appreciated it!! ;)
"I think it is fantastic for people to be made aware of things they would perhaps not know ordinarily. My hubby has bone marrow cancer and sometimes I am convinced people think he walks strangely because he is drunk. Knowledge can only bring good results.". Well put, Friend!! ;op

Ali Montgomery said...

I think it's great for you to raise awareness! Who else would? Thanks for sharing Zoe's story and that website.

I must say that I really look forward to your comments on my blog!

Raelyn said...

Ali....
Thank-you for the comment!! I was hoping that you would see this!! ;)
"I think it's great for you to raise awareness! Who else would?". You're sweet, Friend!! ;op