I had written a blog in my head as I was driving the other day. It was going to be a carefree comical one about driving and hand gestures. After being flipped off, break checked (they seriously didn't read that blog) not shown appreciation at my courtesy, I decided I wanted to look into the history of hand gestures. When did the middle finger become taboo and when was the raise of the hand while driving considered a thank you? But after the turn of events that day, the subject at hand became a more serious one.
As this is my 2nd Heart Awareness year, I have been meaning to write a blog in tribute to it. I did one for Lily last year, I retold her story to the best of my ability, I was amazed at how well it was taken to. It became the number one read blog on cafemom at the time. It opened many's eyes to a world they never knew existed, it rang home for many who are in the world I dance in, and forced others who have turned a blind eye to the truth and realness around them, to open their eyes and see the heartache and reality this all causes.
What causes you may ask? Are you a new comer to our blog, if so, welcome. Please grab a Kleenex or a washcloth might be better. This year I will not share our story, if you want to learn more about Lily and what shes gone through, you can read last years blog here . Our blog talks mainly about living life with Congenital Heart Defects, copping with the stresses, and the ups and downs of it all. But CHD Awareness week is upon us. Did you know that? That February 7th-14th Every year is Heart Awareness week? 2 years ago I was completely oblivious to it, even though I had 2 children at home. I was unaware because they were and are heart healthy, why burden yourself in a world of heartache when you think it will never concern you? Heart defects don't need to run in your family, your child need not have down syndrome or a genetic disorder to have something wrong with their heart as many assume. Yet, many don't know this until they are pregnant with a heart baby (if lucky enough), catching it after birth, or for the rest, the heart breaking devastation of losing your child altogether. There are many cases of teenagers or adult athletes just dropping and dying from something heart related. Did you know that is usually an undiagnosed heart defect that they most likely had since birth. How do we fix this? Is there a cure? Well there is an answer to both of those questions and story in between.
First, there is no cure for heart defects. It is not something you can just slap a band aid on and say good to go. The definition of Congenital Heart Defects is; A congenital heart defect (CHD) is a defect in the structure of the heart and great vessels of a newborn. Most, (not all) require a surgical repair within the first few months of life. Even if a surgical repair is done, it doesn't "fix" the heart, it mends it. Many will lead normal lives, but for many others with sever defects, they have a long road of repairs, follow up appointments, and seeing a Cardiologist regularly for the rest of their lives. But lets go back to the beginning, in order to repair we MUST KNOW.
How do we go about fixing all of this unawareness and heartache?. Well that is all depends on who you ask. I will tell you I push for echo-cardiograms (just fancy name for what many know as an echo) of the heart, which in our case caught our daughters heart defects. Others will tell you a quick Pulse Oximetry test could be a life saving test also. Which I in turn will not deny, but it only depends on the heart defect itself. In our case it wouldn't have done our Lily much good, even though her heart defects were life threatening, they didn't cause her oxygen saturation's to drop into a dangerous or alerting range. For many other heart babies, a pulse ox is a tool that is a matter of life or death. For the babies who aren't diagnosed before birth, or shortly there after because of low apgar scores, a pulse ox test could save their lives. Most babies with low oxygen saturation's usually turn a blueish color, but not all. So here is the question I would like you to ask yourself now and then again at the end of this blog. Is a ten dollar test worth a child's life?
Why do I ask the question? Such a simple response, it should be a quick and easy yes but I want you to be yelling yes, and then telling all your friends who are pregnant, or married considering having children, better yet, your cashier at the supermarket, the lady standing in the same Walmart aisle as you about this little possible life saving test. If you don't want to do it for me, do you think you could do it for a little girl who's story will rock you to your core?
I would like to introduce Cora, isn't she a beauty? Such a beautiful angel isn't she?
Her story is such a bitter sweet one. She came screaming into this world with all her glory into the loving arms of her mommy and daddy. Such a beautiful perfect little miracle, gracing the world at 9:25pm on November 30th of 2009. Getting Apgar scores of 9/9, as close as perfection comes when being born. Going straight onto mommies belly to be cleaned up, then onto being adored by all. It couldn't get much better then that. Mommy and Daddy were wrapped tightly around her little fingers the moment she arrived. Woven in their hearts and souls the moment of being told they were pregnant. Wanted and loved forever. How could a baby get any luckier. Cora went home shortly after birth just like every perfectly healthily baby does. She was placed in her special going home outfit, placed in her car seat with care, and bundled for her first experience outside.
As many parents know, the first few days at home are tiring, down right exhausting. Trying to find a moment to rest but there always seems to be something to do. Then if you are breastfeeding mommy, you seem to be going around the clock, and Cora did just that. Daddy would get up with her cry, just to bring her to mommy. What a wonderful daddy, not many always hear the little cry. But Cora's daddy held her every moment he could. He couldn't feed her a bottle so he made sure to at least help mommy by bringing her their sweet precious little girl.
At just five days old, on December 6th, things went wrong. Cora cried, it was time to eat, so daddy once again brought her to mommy. Mommy and Cora settled into their chair, and with a bit of squirming and screaming, mommy finally got Cora situated and she was a happy little girl. Daddy walked away to sit down to watch a little bit of TV, he barely made it into his chair when all of a sudden mommy screamed. Mommy looked down and Cora's mouth and nose were covered in blood, she wasn't breathing. What was happening? This healthy little girl was eating just fine a moment ago. Daddy called 911 while mommy did CPR. Finally daddy decided it would be quicker to get into the car and drive to the hospital instead of waiting for the paramedics.
By the time they got sweet little Cora to the ER she was gone. The team worked on her tirelessly, but the doctors told them it was to late, their sweet little girl was gone. Mommy and Daddy went to see her, one last time, then all of a sudden they got a super faint heart beat. Was this hope? The doctors worked on her a little bit more, a few more minutes her little heart fluttered for, but then said enough was enough. The doctors once again told Mommy and Daddy she was gone. How unfair to have to hear it twice. How could any of this be happening? She was born perfectly healthy, nice and pink.
After an autopsy report was done, sweet little Cora was diagnosed with Congenital Heart Defects. Yet not a sign nore symptom at birth was present to alert them to any of this. With high apgar scores, with great coloring, beautiful cries, there was nothing from the outside appearance that let on to anyone there was something so wrong with her little heart. Could a simple Pulse ox test have saved this little heart?
In Cora's case we will never know. Yet shouldn't such a simple little test be offered to all babies before they go home? Why would a parent refuse a possibly life saving test? Like I said above, I am all for echo's, but not every one's insurances will cover them seeing they are about $5,000 a test. For the most sever heart defects, a pulse ox should detect it, it should bring enough alertness to make the doctors stop and try to figure out what is going on. How are you to say no to a small test as a parent?
Are you convinced yet? Are you saying, Jenna, stop it already we get the point, ask for the test. You can't be told no if you are asking for it. Granted this test isn't a guarantee, but it is a chance. A chance that one little heart could be saved from the same story as Cora's and Cora's mommy feels the same.
Kristine has now made it her life's mission to spread this awareness. Her life was ripped to pieces that dreadful day, her heart was ripped out as she fell to the floor in tears. We all have choices after life altering times such as these. As much as it hurts Kristine every day to get out of bed and some days she can't without the help of Cora's unfaultering daddy, she has a mission. Can you take the time to help her with hers? Our should I say all of ours? As a heart parent we always have a mission of awareness. How do we change things? One voice at a time, but if all our voices echo the same thing, the ringing effect is that much louder.
So once again, I ask you, is a ten dollar test worth it? Is it worth it to you, to take the 60 seconds it could take you to tell another? Is it worth it for your child? Your friends? Your neighbors? Your servers? Awareness is only made by taking the time to make others aware. Cora's story needs to be shared, to make other's aware, because unfortunately, there are so many other Cora's out there who's voices weren't heard, who's stories go unknown. Every story such as this should be told, it should ring in the ears and minds of others. Let Congenital Heart Awareness be brought to light and the attention of all. The only way of doing so is by your help. One person at a time. Are you up for the challenge?
I challenge you to tell at least one person, a friend, a relative, and see how many people they tell. If you don't want to do it for me, will you do it for Kristine who's arms ache for her little girl who was ripped from her so suddenly? For Cora who became an Angel before she should have? For all those little ones who were lost to something they never knew they had. To those who fight a brave fight through surgeries but still lose to it anyways? To those who still fight, who endure more then any child should have to? Are you up to it?
Think of that the next time you are having a conversation that is lagging, it could be filled with awareness, you could help save a life. You could help one less set of parents ache from losing their child.
I make it my goal because of my Lily, but those of you who don't have Lily's or Cora's, could you do it for us?
We thank you, from the bottom of our hearts, from the bottom of our broken yet mended hearts.
With our love, our many of hugs, and blessings to all,
Jenna McLaughlin- Proud mother of a Princess CHD Warrior, who has under gone so much, yet fights on.
In our many thoughts all of our dear sweet warrior angels, may you stay close to your mommies and daddies during this time or heart awareness. You are gone, but never forgotten.
Transplant Day 8
22 hours ago