Sunday, February 7, 2010

CHD Awareness Week

Hi all!

I have been majorly slacking again with the blog. Shameful. ;P But what better way to jump back in than to dedicate a posting to my inspiration of the week(all the time, really. But especially this week), Miss Ava.

Let's first start with some CHD facts.

* Congenital Heart Defects are the #1 birth defect.

* Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood.

Ava was born without any complications, and certainly with no prior indication of what was going on with her little heart.

Ava was my dream come true. My healthy, beautiful, perfect little girl. She was cute, and as pink as could be. Who would of thought...

There was no indication of what was going on in little Miss Ava's body. The doctor detected a murmur, Ava wasn't eating very well(milk was coming out of her nose and she would tire before taking much in), but were reassured that everything was fine. Ava spent the night with me in the hospital, anticipating an am discharge. That morning, the nurses took Ava to, as they told me, "run just a couple of simple little tests to make sure that murmur is harmless." Hours went by, something wasn't right. We ask nurses, they don't seem to know much though. Finally, Ava's pediatrician comes by and says that we are officially discharged. I specifically asked, "So the murmur was harmless, then?" He gives us a big smile and says absolutely. Free to go home. We are SO happy, SO relieved. We ask where our daughter is and he lets us know she is on her way back to the room. He leaves the room. My husband has to go pick our son up from school. Not 3 minutes after he leaves, an older gentleman in a white coat with a very stoic look on his face and an apparent aversion to eye contact enters my room. Now, I am not psychic or anything, I don't even believe in such a thing. But I just knew. I can still feel that fear and utter sadness deep in my heart the moment I first met Dr. Van Gundy, as if it were just earlier today. He asks to come in, to speak with both my husband and I. I let him know my husband won't be back for at least 20minutes. He asks if he may go ahead and speak. I think I kind of just nodded my head and grunted.

I am a Pediatric Cardiologist. Your daughter has something very wrong with her heart. Something we refer to as Hypoplastic Left Heart Syndrome. A very serious form of Congenital Heart Disease. You have two options. Permit her to be transferred to UCSF or LPCH, or take her home and give her comfort care until she passes. Her CHD is not compatible with life. Without surgery, she will die. With surgery, there are many fatal risks involved. Her quality of life is unknown and nothing is guaranteed. I have had parents go through the surgery and later regret it, and vice verse. You have two options. I am sorry. I am going to leave now and return in a bit. Please discuss this with your husband and make your decision.

And there I was. Alone. Broken. Confused. And the most scared I have ever been, and hopefully will ever be. I tried to hold it together long enough to call my mom and try to get a hold of Greg. I somewhat succeeded. I can't even remember what I said when I got my mom on the phone, but I know it was enough to alarm her and for my husband to decide to leave Greg at the grandparents before coming back to the hospital. Once he got there, the nurse came in and gave her apologies, said she was going to shut our door and to take as long as we needed.

My sincere apologies to any other new mommies that day at Mercy San Juan who may have heard me screaming and crying.

We let it all out, and immediately wanted to see our precious little girl. Nobody warned me for what I was about to see. Not that it really would of made much of a positive impact on my mental stability at that moment.

Imagine giving birth to an absolutely perfect, beautiful, precious, special little baby. They score so well on their little newborn APGAR tests, you struggle nursing them, but love that bonding time, they spend their first night of their life right beside you. You are SO exhausted, but can't help spending half the night just staring at your little miracle. You wake the next morning and continue staring in awe, just totally smitten. You take in her newborn smell, her baby bitty toes, fingers, who does she look like, look at that perfect skin! The next time you see your baby, she is hooked up to so many machines, her umbilical cord has been cut for more access, and half her tiny face is covered in tape. Tape that is holding in her breathing tube. She is in a new room of the hospital. One you've never seen before. This room is full of tiny little babies, all hooked up to breathing machines, tubes, lines, on medications that are keeping them alive. Heartbreaking and soul crushing doesn't even scratch the surface.

As a mommy who hadn't even heard of CHD before, who only knew of defects caused by poor decisions made on the parent's part, I couldn't stop thinking, "I did this. What did I miss, what did I do wrong that put my precious child in this position?" I hated myself. I can honestly say it took months, if not longer, to get over that, for the most part. I went over my every activity with a fine tooth comb. Ava's birth was planned. I started preparing for her weeks before we actually conceived. I read every book and article I could get my hands on about how to have a healthy, and safe pregnancy. Those who were around me while I was pregnant with my diva, can vouch. I was almost neurotic about making this a healthy pregnancy. But it simply wasn't enough. What I, in my naive state, grew up believing was simply; you take care of yourself while pregnant, you make every possible effort to make that baby priority number one ideally even BEFORE you are pregnant, and you will be rewarded with a happy, healthy child. A few exceptions, for someone of my age and with my somewhat clean family medical background, highly unlikely. Never even heard of CHD. Why? Why is it that the number one present at birth defect, the number one cause for death in the first year of a child's life, taking twice as many children's lives yearly than all forms of childhood cancer combined, has little to NO coverage. And funding to match.

CHD Facts:

* The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation

* This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation

* The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation

* Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation

* Though research is ongoing, at least 35 defects have now been identified.

* 4-8% born with CHD have Hypoplastic Left Heart Syndrome

* 4-10% born with CHD have Atrioventricular Septal Defects

* 8-11% born with CHD have Coarctation of the Aorta

* 9-14% born with CHD have Tetralogy of Fallot

* 10-11% born with CHD have Transposition of the Great Arteries

* 14-16% born with CHD have Ventricular Septal Defects

* Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood.

* It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications.

These are our children, and they are dying. My daughter is a "happy ending" story. But Ava's story is far from over and we are promised nothing beyond the now. I have seen far too many of Ava's heart friends struggle just to live, or pass away. They all deserve better. And don't we owe it to them to help achieve that?

February 7-14 is chd awareness week. Please take just one hour this week, you pick the day, and educate yourself. Find out the symptoms and warning signs of CHD. Urge an expecting friend to ask for a pulse ox reading on their newborn, share the story of a chd warrior you know. If you are reading this blog, you know of at least one. :) Know that just because you see our babies running around and keeping up with the other children, or you can barely notice that fading scar down their chest, does NOT mean they are "cured" or that CHD's "can't be that bad." The statistics say it all.

This week, I am going to celebrate my warrior, and all heart heroes. I am also going to remember and honor those that earned their wings far too soon, and the families they left here on earth. I love respect and admire each and every one of you!


Melissa said...

This is an amazing story. You and Ava are very strong. Thank you for what you are doing.

Auntie Tiff said...

For Ava : 5/24/06 was the first time i ever laid eyes on you. You were sleeping peacefully in your mamas arms and i did not hold you as i did not want to disturb you. all i could do was think how beautiful you were and how my heart melted just looking at you :) lil cute thang! I just want you to know Ava, you are my You have been through so much in these past 4 years then most people endure in their life. To look at the pics of you from the moment you were born till today when i seen you at your home, just amazes me at everything you have overcome. I just thank God everyday for the pleasure of being able to know your sweet family and for being a part of it. I look forward to many many more years of watching you bloom into a bigger and more beautiful flower than you already are. You are one amazing little diva and by the way, just if you were wondering, auntie Tiffs tear ducts work great! LOL. love you Purpleicious!

Kerry Tylenda-Emmons said...

What an amazing girl, Ava, you truly are a warrior! Brought back some bad memories reading this...wish our babies didn't have to fight so hard just to keep breathing. It's just incredible they're still able to smile!

Stefenie said...

Thanks for sharing that very heartfelt story. We too didn't learn about our child's defects until after his birth....two weeks later. I can't imagine someone walking into my hospital room and telling me one of our options is compassionate care. I would've been screaming too.

What a miracle Ava is!

Stef, Ryan, Wyatt and Logan

Carey said...

Love you post! What a beautiful entry about a beautiful, amazing little girl (and one tough mama)! :)

Stefenie said...

I have some awards for you on my blog!

Stop by and grab them!

mina said...

Such an amazing miracle! Loved reading your story.

Karen said...

Thanks for sharing on Pinterest! I could not have said it better. When my daughter was diagnosed in utero, I assumed our new charity of choice would be AHA. I was very wrong. I am big on research, more than education. I believe the best education is us, the families sharing our stories on our blogs and to anyone who cares to listen. And that is free. Save the money for researching better treatments for better outcomes!