Why Me but Why Not Me!

Why Me? But Why Not Me!
By Mom 2 Andre

Why me? If I only knew how life would have turned out when the day I learnt I was pregnant. I was told on numerous occasions that life would not be the same when you have a child. I accepted it with a smile because I believed that God blessed my life. I was looking forward to the time my little bundle of joy would be here, counting the days on the calendar, earmarking all the doctors’ appointments and ultrasounds that came along with the journey.

Nothing would have ever prepared me for February 12th, 2008. It was a phone call from my ob/gyn, telling me that my little one had an enlarged heart. I remember feeling numb all over, it was a feeling of total despair. What did I do wrong? How could I fix this? What did I do to deserve this. Why me?

Nothing would have prepared me for the birth of my first born. I was induced at 39 weeks of gestation. “It’s a boy!” everyone cried to me. “It’s a boy! Congratulations!” they said to me. I heard my little boy’s first cry; yes, the one I longed to hear from the time I knew I was pregnant. I cried with my husband, and he cried with me. We named him Andre Jacques. Minutes later, my eyes laid on my little treasure, head covered with his little hat, and tightly wrapped in the hospital receiving blanket. This moment only lasted for a few seconds. It was not fair, I thought. He was rushed to NICU, in case something was to happen with his heart. I suddenly felt sad. I wanted to be the first one to hold him like a new mother could. I was his mother after all. No one should not have been allowed to hold before I did. However, because of my c-section, I was only allowed to hold my son 12 hours later. I was mad. Why me?

Nothing would have prepared us for Andre’s first heart procedure, known as valvoplasty. We were waiting to see what happened, how he would develop during the first week of his life. At 6 weeks old, we were at the hospital for a routine echocardiogram. The next thing we knew, I was carrying Andre half dressed from one building to another. I was walking with tears rolling down my eyes. I saw people looking at me, wondering why I was crying. I finally reached the PICU. I laid Andre down on his bed. I stared at him from one corner of the room while nurses frantically hooked his little body to monitors. He looked very pale; his lips had no color. The next day, he was taken away from me for his first heart procedure, not knowing if I were to hold him ever again. His heart was in a bad shape. Why me?

Nothing would have prepared me for the phone call that I received from the cardiologist days later. He told me that the valvoplasty did not produce the outcome he was expecting. Open-heart surgery was in sight. I was in Andre’s bedroom, sitting on the computer chair. I put the phone down and all I could do is cry. I felt helpless. I would do anything for my little guy to avoid surgery. Why me?

Nothing would have prepared me for the last minutes with Andre before he was taken away from me once again. Totally sedated and ready for surgery, he did not know who I was; I could see it in his eyes. Sad images raced though my mind. What did I go wrong? Where did I fail? I wished my family were here. Why me?

Why Not Me? I have everything. I have a roof on my head. I have food on the table. I have clothes on my back. I have a good God. I am healthy. I have the best husband I can ever ask for. I have a supportive family. I became a mother on May 1st 2008.

Andre was diagnosed with a congenital heart defect known as severe Pulmonary Stenosis, Tricuspid Valve Regurgitation, and an enlarged right atrium. I became the mother I always wanted to be, one who would bond with my child at a different level that many would not have the chance to experience.

At 6 weeks old, Andre was in the hospital for his valvoplasty. I did not know if I was going to hold him ever again but I lived to be a mother for another 6 weeks.

At 3 months old, Andre was in hospital for his open-heart surgery. The cardiologist recommended that it were done earlier, but the surgeons advised to wait until he was 3 months old. Ideally, it should been a surgery better performed at 4 months old, but it was too risky to wait any longer. I lived to be a mother for another 2 ½ months.

Through this entire ordeal, I did not have to work a job outside the home. This meant I could be by Andre’s side 24/7/365 during his recovery.

With the medical expenses adding up to unimaginable figures, I had medical insurance to cover all the procedures that were required for Andre.

I live 15 miles north of the country’s best hospitals for pediatric cardiac care.

I have access to great support from the CHD community.

I believe that everything in life happens for a reason. We may not understand it right away, but all I know that each of us has a God given destiny.

I believe that we are the chosen ones to deal with these difficult situations because we can.

I believe that remaining thankful for everything throughout difficult times keeps our heart from allowing anger to stay and develop into bitterness.

I believe that new purposes arise from difficult times.

I once believed in “why me?” Along with extremely difficult experiences with Andre, a new purpose in my life has emerged. Today, I am able to help others through their time of difficulty. I now ask a new question: “Why not me?”

Social Experiment on FaceBook

Chances are, if you've come across this blog, you're likely also involved in a social network of one kind or another online. Many are on FaceBook... so we've created a bit of a social experiment, trying to pass the word onto others about heart defects and, hopefully, create a free-flowing community of supporters for the cause. If you're on FaceBook, you can find us under causes at "CHD Awareness Campaign."

From time to time announcements about various events throughout the nation will be posted. The cause is not affiliated with any group, but if funds are raised (and some have been), they will all go to the Children's Heart Foundation to further research.

The Care Behind the Kids!

Mark O'Shea and the Staff of the Pediatric Heart Institute at Vanderbilt Children's Hospital (Nashville, Tennessee) are back! But this is not a music video... it's a nine minute look at the Doctors, Nurses, and Staff of the Heart Institute and what they do. We present this to you on Valentine's Day with love and best wishes from both Kim and Steve!

Carrying the fight to the enemy

175+ people affected by Congenital Heart Defects (CHDs) attended Lobby Day 2009 in Washington, DC! The attendees were CHD Survivors, their family members, and their cardiologists. Brought together by the National Congenital Heart Coalition (NCHC), members of seven different CHD support groups united to to promote the Congenital Heart Futures Act, a new law that, if passed, would establish permanent federal funding for CHD research. It would also mandate that Congenital Heart Disease is a chronic Illness requiring lifelong care.

After a briefing/training session, attendees were split into groups by geographic location and sent to meet with their Senator or Representative. Steve didn't lobby, but stayed in contact with the groups via telephone and Twitter and blogged the event. His contacts reported fourteen congressional visits, with a high majority of them receiving a positive or very positive reaction. And obviously, those were only a fraction of the total number of visits.

Steve had personally been worried that the vote on the Stimulus bill that was occurring in the Senate would be a "distraction" from our promoting the Congenital Heart Futures Act. It may have been; we will never know. But Lobby Day had been scheduled many months in advance and just happened to fall on the same day as the vote; the only thing that could be done was to work around it.

Although from different groups with varying levels of lobbying experience, our lobbyists meshed quickly and worked together as a team. After all, we have a common enemy: Congenital Heart Defects are the #1 birth defect. A new CHD is detected (diagnosed either at birth or later in life) every 14 minutes! So in the ten hours of Lobby Day 2009, there were 42 NEW cases of a Congenital Heart Defect reported.

The Congenital Heart Futures Act will ensure that their life experience with CHD will be vastly different than ours. That's why this fight is so important.

Inspiration

There's a great new blog out there by Teri Martin, an adult CHD survivor... Inspiring Hearts. Teri's personal blog, Finding Inspiration Every Day has often been a source of solace for me during stressful work days - she lists simple things she loves, reasons to be happy, tidbits of her life. And her art work is amazing. She says her art is a direct result of her CHD - while other children played sports that were not an option for her, she pursued art - and is thankful for her gift. (Some of her art is featured in this post - more can be found on her Etsy site!)

Here's Teri's story, and an introduction to the wonderful things she's doing to spread awareness, create cohesion in the CHD community between the generations of survivors and to infuse others with hope, creativity and a passion for life.

Inspiring Hearts
by Teri Martin

If I had to pick a word that summed up my life's motivation, it would be inspiration. I was born with Hypoplastic Right Heart Syndrome PA/IVS with moderate TA. Being one of the oldest survivors of this complex disease, I never really knew many people with CHD growing up. So I focused on what inspired me to get through a lot of the hard times as a child and teenager. I could not go play on the playground when it was too cold or too hot, let alone try a sport. So I spent hours creating art and writing. Even as a kid, every time I was depressed I would bury myself into things that inspired me to be something more. My mother would probably say I had a very active imagination.

It wasn't until college where I really met people like me who had CHD. Still, back in college information was scarce, what I could find on the internet didn't make much sense unless you went to medical school. It wasn't until years after I graduated, that I learned about CHD associations like the ACHA. I was a bit hesitant to join, but I eventually I did, when I thought it was best to seek advice from those who could understand me and know what I have been through. So this past May, I went to my first conference, mostly to learn the information that was to be presented to us, but I walked away from the conference with much different objective. I wanted to learn my new friend's stories. The best times I had at the conference where the times we just sat down and shared our lives with each other.

I left the conference inspired to help others. When I returned home I kept thinking that there wasn't any place where we could really share what we have been through. The ACHA message board is great, but was more geared to talking about medical issues which is a great thing, when you want advice, need to vent your frustrations, or just want a friend to listen to you.

While I was at the conference some mothers were there who had young children and they asked us so many questions. When I got home I would have daily emails from parents, and teenagers asking me a lot of the same questions I was asked at the conference. So, as 2009 approached, I drew from something I already loved to do and had been doing for a few years already; I started another blog.

I started off by asking different parents CHD groups to send me questions, I also asked my fellow survivors what questions they think are important to answer. After I had gathered my question I went to my fellow ACHA'ers and asked them to volunteer to answer these questions and tell their stories. The response was overwhelming! Some of these questions are really hard to answer so it takes time, but each week I have gotten back at least one person responses, and I hope to have more in the months to come.

So in January I took my favorite word inspiration and named my blog "Inspiring Hearts," Living with Congenital Heart Disease: These are Our Stories. I want this blog to be a place where adults with Congenital Heart Disease are able to give hope to future generation of survivors, but also inspire each other to live life even in the face of such challenges.

Thank you, Teri, for all you are doing for the CHD community, your peers and the generations of survivors to come. You are, truly, an inspiration!

Tomorrow's a Big Day!

Over 200 people are gathering in Washington DC tomorrow to promote the Congential Heart Futures Act. Steve, my co-blogger, will be there, keeping us filled in on the progress, providing some interviews and promoting the cause. I'm disappointed that due to last-minute circumstances I can't make it!

Here at the CHD Blog, we frequently receive stories and poems, some of which we post. There are a lot of heart warriors out there, and, in my mind, it's a wonderful thing. Lately we've received a few emails from a Heart Dad in Kentucky, one of which we posted. Recently he sent a poem to share with our readers. After consulting with my co-editor, we felt it was well worth posting, and hope you will agree, even if you come from a different religious background!

My Life Yet To Come

by David Moore

My days were numbered from the very start

I fought for every breath due to my heart

My PDA closing I started to gasp

Just trying to breathe became such a task

The medicines they worked for a couple of days

But my heart still beating like I was running a race

It was beating so fast it was wearing me out

My heart was failing there was not doubt

My parents were worried, distressed, and confused

The tears now flowing due to the news

Tomorrows the day I go under the knife

I'm not even two weeks and fighting for my life

My lactic's were climbing and my function so poor

I had not the energy to play on the floor

I'm feeling so weak I just want to sleep

Something my mom is watching is starting to beep

I can hear them talking but just don't understand

I am still comforted by the warmth of her hand

The tone in her voice as she started to speak

Something about Jesus and my soul to keep

I have my eyes closed but I still see a light

I'm am very little but I know something's not right

I hear my mom cry as I took my last breath

But I am to young fear this thing they call death

The first thing I saw when I reached towards the glow

Was the figure of a man that for some reason, I know

He wrapped me in his arms and I felt so safe

I reached up to him and I touched his warm face

He spoke so softly and as not to startle me so

He told me he loved me and was letting me go

He told me a story of my life yet to come

That one day my living would be witness to some

I don't know why and I still can't explain

But I opened my eyes when I felt a sharp pain

I took a deep breath and I started to cry

I looked up to see mom with a tear in her eye

Still hooked to wires and lying in bed

For some reason I'm stronger and wanting to be fed

My parents don't know it but I saw God that day

He gave me more time to frolic and play

God has his reasons that some live and some die

What some parents have to endure leaves a question. Why?

I know it's not fair but I don't question the choice

I am a witness for him and I still have a voice

My heart isn't normal but it's perfect you see

Because without it there's no story, no poem about me

I'm one of Gods miracles a testament to his grace

I was only a week old but I got to touch his face.

David, like many of us, saw a need and void in the CHD community, so created a network, kentuckianalefthearts.com.

Within the heart community there is a lot of talk - how many groups are too many? Aren't our efforts too diluted already? Yes, we are diluted, and we need to unite. But are there too many groups? My answer, though many will not agree, is that different people need different levels of support, wish to be active in different ways, and have different overall goals. We all have one thing in common though - we all are, or love, someone with a heart defect. We all strive to make a difference for others that have walked down the often scary and lonely path of CHD survival and loss. We find it in a diverse array of ways, but we are united in spirit and hope for cures, better support systems, increased research and greater awareness.

Share your group's information and services, and we'll be happy to post them here - the more we network, the greater impact we can make!

Five Minutes: A Heart Mom's Story

It's National CHD Awareness Week! This year we will be posting entries daily, once again - 7 entries for 7 days.

I've had the privilege of meeting some incredible people who work very hard to share their lives with others, opening windows to allow the public to peek into the life of their innermost struggles of living with CHD.

Today's post features the writing of one such person - a heart mom who lays out the truth of the struggles many face with such honesty it stings. Though I haven’t been down the same road she has, I felt like a piece of my heart and soul were read to me. Perhaps some of you will feel the same...

Five Minutes
by Josie Kurz

Five minutes. Probably more time than it will take you to read this post, significantly less than it has taken me to write it. Certainly enough time to change a life.

A Mother's Instinct

Two years ago, when we first contemplated bringing home a sick baby, Michael and I relied upon his medical background to assure ourselves that everything would be alright. But as we came to learn, Claire's health is complicated and in retrospect, it becomes obvious that no amount of schooling could have prepared us for this journey. With no medical north star, we navigated rough waters, lots of tears, and some long nights. Lonely and scared are only the tip of that iceberg.

What became our beacon of hope was the emergence of a primal, almost unworldly instinct. To say that I know Claire is a bit of an understatement. It isn't just that I nursed her, or that I didn't leave her side for the first few months of her life and burned every minute detail of her health into my brain...it is something deeper. Michael has described our attachment by saying that despite their best efforts, our doctors hadn't cut the umbilical cord. Maybe because we are so similar, or maybe because I had to, or perhaps it was a gift from God, but whatever the reason, I know and understand that baby on an almost psychic level. With a little encouragement from some other heart momma's, Michael and I learned to rely on my instinct, particularly when Claire's health began to fail. When I felt something was amiss, something was always wrong.

Year Two

Sometimes I have to laugh at myself and the way that I came to handle the issue of Claire's heart; I tolerated its presence in our family so long as it stayed very quietly in its own corner and allowed us to live very much the way we want to without intrusion. Maybe because in the beginning we coped with diagnosis by clinging to the notion that Claire would get the switch and then be "fixed," it never really settled into my consciousness that congenital heart disease is a chronic illness in every sense of the definition. Once she flew through her open heart surgery, I was convinced that the worst was behind us and I never wanted to look back.

And then Claire got sick.

As I sat by her bed in the PICU, I suddenly realized that we could still lose this baby. For the first time that thought sunk in, and it was as horrendous as receiving the diagnosis all over again...although this time almost worse because by now Claire was more than an idea, a daughter about to arrive, this time she was Claire, a very real and amazing little girl who had stolen the hearts of our entire family. And those eight days were a very difficult battle for us because Michael's instinct was to rely on the opinion of the highly qualified physicians charged with her care and my instinct ran directly counter to their suggestion that, outside of being severely taxed by a difficult and devastating virus, Claire's heart was fine. I can't explain it, but I knew with every fiber of my being that all was not well.

Suddenly, congenital heart disease was no longer something hiding just outside my daily stream of consciousness as something we'd been through, but rather was standing on my chest, gnashing its teeth in my face. Year two of being a heart momma became infinitely worse than year one. There is no fix for this scourge, it's here to stay.

There were approximately six weeks between Claire's discharge from the PICU and her catheterization. During that time we did follow my instincts, and with the help and encouragement from family and friends, went to work creating a plan for managing Claire's health. I remember walking around in a daze, feeling like a live wire. I could feel impending doom, I knew we were facing a bad outcome.

I was convinced that the cath would show heart failure and that we would head immediately for another surgery. I was unreasonably petrified of needing another surgery, of what it meant about Claire's heart, her odds, her long term survival rates. I was so focused on what that cath might show that I never once stopped to worry about the procedure itself.

Laying her down

During our first round at Children's, Claire was still so tiny that they would allow us time to say goodbye and then they would take her away to sedate her and prepare her for the procedure. This time she was old enough that they allowed us to stay with her as they sedated her. What I didn't realize was that this entailed me carrying Claire into the cath lab and laying her on the (adult sized) table as she's still clinging to me; leaning over her with my face as close as possible to hers as they start the medicine and feeling her fight to stay with me. It took a lot of medicine to get her down and it seemed like an eternity that I held her little body as it struggled, but I would have stayed there forever if only to avoid the sensation of her finally letting go. Never have my arms felt so empty. Never had my heart felt so lost.

What were we doing when Claire was in the cath lab? Sitting in the waiting room, reading magazines, laughing at my nephew's antics. I think we wandered to the cafeteria, recalling how the pear trees were in full bloom when we'd been in this position less than a year earlier. I know I was numb, so fixated on preparing myself for the days and weeks ahead. I know I was traumatized by what had just transpired. But I wasn't worried about my baby, not just then.

What was I doing during those five minutes when my baby's heart did not beat? I can't tell you, I don't know. The greatest horror of learning that Claire had arrested for five minutes was the knowledge that I didn't know, during those five minutes, that something had gone desperately and drastically wrong. Me, with my touted mother's instinct and my ineffable connection to Claire...I wasn't aware that it could all be ending. I felt then, and still carry now, this overwhelming anger that I have been robbed of my one final safety net ~ not only could we still lose this baby, but I might not know it as it happens. All at once, the worst wasn't in the past, the worst is the fear of what could come.

In the wake of those five minutes

Who am I in the wake of those five minutes? Surely the mother and wife and daughter and sister that I was before and yet certainly never the same again. Those words are soul-searing, heart shattering, life changing. Nothing can ever be the same again. And yet, we had no time to stop and process, barely even time to grieve. What do you do? What can you do? We went first to the Chapel to turn everything over to God, by whose hands I believe all of our fates to be sewn. And then to our daughter, so tiny in that bed, surrounded by a very skilled team of physicians working to keep her here with us.

It's a blur, a pain-filled hazy blur from which I have spent the past nine months running. The walls penning in those five minutes and the havoc they wrecked on my heart and my soul began to crack in November. Suddenly, in the midst of a headache-induced daze, I found myself confiding these exact thoughts to confidantes who are the very few who could actually understand that pain, my sisters on this agonizing road, mothers to heart daughters, achingly familiar with this burden.

Leaving 2008 in 2008

Only now can I put into perspective the fallout of those five minutes. I freely acknowledge that those moments irrevocably changed me but I sense that the fallout had a wider impact. Because it is precisely what it is, no one wants to discuss it. Within our family, the ripples have been felt quietly; but families carry on, buoyed by love and understanding. Friendships seem a bit more vulnerable. While some have grown stronger, others seemed to wither on the vine and I didn't exactly understand why until I read this fascinating insight on another blog (in the context of how friends and relatives respond to a parent's grief):

"like the mourner, friends and relatives are often angry that this bad thing happened, angry, perhaps, at the universe, the gods, the unfairness of it all. But, in many cases, I think they're also very angry about the loss of their old relationship with the mourner. They don't know or particularly like this new, sad person. They want things to go back to the way they were, to reconstruct the world in the shape it was before everything shattered. At some level they realize that that's not going to happen, but it's probably not all that uncommon to be [angry] at the griever, blaming them for making it impossible...many friends don't express these feelings directly or, perhaps, aren't fully aware of them."

When I read this passage I had such a strong feeling of recognition that I felt almost ill. To be honest, there are times when I myself am angry that this has all happened and, on some level, I would love to go back to the person I was before Claire, to the relationships I had then...but not if it means going on without Claire. And then I feel frustrated that there are those out there who expect me to be the person I was two and a half years ago, who can't understand how impossible that might be.

Maybe because of those five minutes I am suddenly able to be gentler to myself, more protective of myself, more forgiving of myself than at any other point in my life. I know I have been traumatized, I know that I suffer through bouts of PTSD and depression, I know that I experience intense anxiety about the things that are in God's hands only. I allow myself to deal with those emotions, to be sad when necessary, to cry, to worry, to hover. But I also refuse to let myself wallow in the negative, because bottom line, I still have my baby girl laughing and running and dancing and getting into all kinds of mischief (not to mention her beautiful and healthy big sister, a true light in our lives). As Michael said from the very beginning, we will endure unspeakable pain and suffering now if it means that Claire will never remember the struggle or understand what we (and she) went through in order for her to survive. While those five minutes devastated me, they were same five minutes that that allowed Claire's failing heart to return to optimal functioning.

Looking Ahead

So to me, 2009 is full of promise. I enter it feeling older, wiser, and more purposeful. I have set goals for myself, some involving letting go and others, starting anew; moving forward in ways that were too overwhelming to contemplate last year but seem natural and comfortably enticing now. I accept the truths that I learned in 2008 and I honor them by living life to the fullest, by loving my children with everything that I have in me, finding joy in our moments together, carving out special time with my husband and giving myself space to be who I am and to feel how I feel. Every day is a gift, and so even when it's storming, I intend to get us out there, dancing in the rain.

CHD Survivor Video!

This is Mark O'Shea's video for the song "Look at You Now!", filmed at the Vanderbilt Children's Hospital Pediatric Cardiology Unit. As you'll see at the end of the video, Mark's one of us!

Enjoy!